Biding our time until Wednesday

Today was another day of basic functioning for Susan – sleeping (a lot of it), eating, bathing, etc. We are biding our time until her shunt adjustment on Wednesday. I am absolutely counting on her present symptoms being related to hydrocephalus and being relieved once the shunt valve is adjusted. I’m also expecting her mind to clear and her strength to return so she can begin rehab once again. Without such a turnaround, I can’t see her making much progress. She’ll have a lot of work to do. Meanwhile, we trust the Lord and wait.

We missed church yesterday. After we were showered, dressed, breakfasted, morning-medicated, and once again impossibly late, Susan didn’t have the strength for it. I made the decision to stay home while we sat at the kitchen table. I suggested we read some selections from Streams in the Desert we’d missed recently so we could at least devote our hearts toward God for a little while. The entry for June 29 pierced my heart. I began weeping as I read. When I finished, I broke down sobbing as I lay my head in Susan’s lap. The weight of what she’s going through, what I’m going through, and what we’re going through (so much of these are separate things) – the weight of it all broke me down. It’s all so much. At once, something beautiful happened. Susan consoled me. She moaned an understanding “Ohhhh,” and rocked and patted my head in her lap. Even in her diminished state, my wife comforted me like she always has when I’m having a hard time. Her care for me was instantly and deeply satisfying. She helped me uncap and let the fizz out. I felt better right away.
As for what I had read, I can’t describe it. For me, its truth went deep and nailed me. If you’d like to read it yourself, here it is: "There We Saw the Giants."

A view into darkness

Sometimes I don’t know why I write these intensely personal things my wife and are experiencing. I guess it’s just real life. It’s partly therapeutic for me, and for some reason, partly an obligation to make and share an account of it. I don’t want to betray Susan’s modesty, and I don’t believe I’m dishonoring her by including the context of her remarks. But she said some amazing things today that once again illuminate the darkness of her mental confinement. She can’t express exactly how she’s witnessing her world right now. I’m always trying to encourage, to play, to joke around. I’m relentless that way. Even so, her thoughts today alarmed me. As I wonder about their meaning, I hope her words merely express the level of disconnect she presently feels from the rest of the world and have no other momentum.

2pm. Susan was in the bathroom. Are you done? (If I’m done does that mean I’m dead? No, it doesn’t, does it?) Why did you ask that? (I’m just trying to understand this existence).

5pm. Susan was waking up. Come on, Susan, time to get up. It’s time to go potty. Potty like a rock – potty like a rock star…I want to rock n roll all night and potty every day…It’s my potty and I’ll cry if I want to…I went to a garden potty... (Everyone knew my name.) Hey, that’s right. You know the lyrics better than I do. (Then they must all be dead if they knew my name.) What do you mean? (They must all be dead because I’m dead, aren’t I?)

7pm. We were talking before dinner. Susan, are you sad? (Yes, a little.) What’s making you feel sad? (All the things I have to think about while I’m processing what’s going on.) What things are you thinking about that are making you sad? …are you thinking about the kids? (Yes.) What are you thinking about the kids that makes you sad? (The decisions they’re going to have to make.) Are you concerned you won’t be there when they make those decisions? (I guess so.) What else? …You said you’re sad from all the things you have to think about while you’re processing what’s going on. What else is making you sad? (The things I might have to go through.) Yeah, I can see why that would make you sad. Those are things we don’t have any control over, aren’t they? (Yeah.) Are you afraid to die? (No.) But you’re afraid of what might happen to you before then? (Yeah, a little.) I understand. Do you trust God? (Yes.) With God there’s always hope, isn’t there? (Yeah.) It’s okay to be sad, too, but we just don’t stay sad forever.

Plumbing the depths one year later

Today marks one year since Susan returned from Clearlake on the day after her fated CAT scan. After a surreal 12 months and her most recent ebb, we keep plumbing the depths of Susan’s mental deterioration. Sometimes the things she says are revealing on a variety of levels, from the ordeal of brain trauma to her persistently good humor. Susan’s words are in parentheses.

4pm. Susan was waking up from a long nap on the lounge chair in the patio. What are you doing? (I’m planning my strategy.) Really? What strategy is that? (I’m thinking of the things I can take control of.) What kinds of things do you want to take control of? …let’s start small. (Nature.) That’ll do. Or how about taking control of the world? (That will be fine.)

New equipment

Susan’s wheelchair and bedside commode were delivered today, two necessities that tell of her recently worsened condition. Both are welcome tools right now. The chair reduces the risk of her falling while cutting the time it can take to move from place to place in the house, to the car, at church, and so on. The commode chair gives her a more stable seat over the toilet and makes for less of a lift for me when transferring her. As valuable as I find these to be, we’re counting on them being temporary. I hope to migrate from the wheelchair back to the walker, and then back to the cane. That’s a worthy goal.

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.

Brain tumor vaccine featured on KTLA news

Dr. Liau and the brain tumor vaccine she's helping to develop were featured in a segment on KTLA news last night called "Vaccine Helps Victims of Brain Cancer." You can browse for it and other reports featuring the UCLA and Cedars Sinai teams at http://ktla.trb.com/news/health/

In Loving Memory of Jeff Nord

Our friend Jeff Nord passed away on Friday night after losing his year-long battle with brain cancer. It happened too fast and still seems unbelievable. He was Jayne’s husband, Andrew’s, Zack’s and Delaynee’s father, a leader at Emmanuel Church, and an inspiration to many. We thank God our Father for the work of His son Jesus Christ – that death has been swallowed up in victory and Jeff is with the Lord. We will miss our friend Jeff and we pray for grace, strength and peace for Jayne and her family.

The very basics

This has been a hard week for Susan and me since she’s presently in a “barely there” existence most of the time. Life is focused on the very basics of sleeping, eating, hygiene, and moving to the places where these things are done. She typically has a 20 to 60 minute period of better alertness right after waking before fatigue sets in again. Sometimes she’ll just as well sleep again as be awake after a period of sleep. I did not anticipate how hard this would be. Susan needs 100% supervision right now. My time is totally focused on her with a few hours here and there to try to do an errand or get something else done around the house, which I never seem to accomplish completely. It’s hard to distinguish one day’s activities from another – repetitive labors sort of blend together. Lifting her all the time is a strain. I long for Susan to be independent again and can only imagine what it’s like for her.

We had a nurse and a physical therapist visit from a home health agency yesterday. The nurse asked me a bunch of questions and did a basic exam on Susan. Later, the p/t asked me a bunch of questions and did a few exercises with Susan. I was disappointed. Each one visited so briefly and will have limited visits based on insurance provisions. I should have known better than to expect they would be able to improve her situation drastically or quickly – that’s going to take time. I’m glad the p/t reminded me how quickly a person’s muscles will deteriorate when they sleep all the time since I’ve been accommodating Susan’s need to rest mostly. But weakness begets weakness – she needs to do 4-5 sets of exercises each day to fend it off. She doesn’t say much these days, but her attitude remains good in spite of her generally depressed state. She says she’s going to keep trying and not give up.

One afternoon this week Susan became irritable and impatient – not a common state of mind. A few hours later I mentioned she seemed sad and asked her why. She said it’s hard to communicate. As I probed her thoughts a little more, she related to me she’ll have a thought or an idea she wants to express but can’t get the words for it. I agreed that would be really frustrating and offered to help her. We decided that when I notice she’s been quiet for a period of time, I’ll ask her if there’s anything she’s trying to say so we can figure it out together. It’s been a better idea than a reality since she usually can’t verbalize the topic in mind. I’m left to throw out ideas like, “Are you thinking about living or dying, about the kids or me, or about what’s on talk radio right now?” Sometimes it works. Sometimes she’s not thinking about anything. At least it may make her feel better that someone is trying to understand her.

Out of it

After doing some grocery shopping after the boys came home from school while Susan slept, I came home to wake her so we could meet a psychologist who may help our kids better handle their mom’s situation. (I had asked one of our brain buddies Cristina Zavaleta if she knew of a counselor since her husband Hank is five years in to his GBM journey. Although I think I have good levels of communication with our kids, I don’t want to ignore any resource that might help them cope. It’s theirs if they need it.) When I woke Susan, her lack of reaction startled me. She was looking straight ahead at me but didn’t seem to see me. She didn’t respond to my greeting. I wondered if she was having a seizure as I raised my voice to get her attention. She responded, but ended up being exceptionally weak and disoriented the whole evening. I really shouldn’t have brought her out of the house, but didn’t have a choice since we were racing the clock as we left. I also hoped a walk and a visit might revive her. It didn’t. Getting to and from the doctor’s office took forever and seemed to drain Susan even more. It’s clear she needs to use her walker again and not just her cane – the first time in over seven months.. While the lower dose of decadron might be lifting her symptoms on one hand, last week’s chemo treatment might be pulling her down on the other. I pray it’s not tumor progression. We’ll find out in a week.

A bit of a lift

Susan seemed a bit more with it this morning and had more energy. Even though she wore down and regressed again as the day went on, I was grateful for the lift because everything’s been going so one-way lately. She spent the evening with her parents and Lexie while the boys and I went to the Angel game courtesy of a client of mine. We enjoyed the outing and the relaxed ballpark atmosphere along with Big-Bang Friday fireworks after the game. Sue’s parents took her to Sizzler for dinner where she had trouble focusing on eating except when it came to dessert. It’s amazing how soft serve ice cream requires no prompting.

Coming home after my evening of respite with the boys, the reality of Susan’s illness returned and weighed on me again as we lay down again at bedtime. I said,

I’m glad I married you. (I’m glad I married you, honey.) I’m glad I met you. (I am too.) You’re my best friend. (I’m glad.) You’ve always been a good helper for me. (That’s what I was supposed to be.) Are you going to leave me? (What kind of question is that?) Are you going to die? (That’s not the sense that I have.) I’m glad. Do you believe Jesus can heal you? (Yes. Do you?) Yes. I know He can. (We’ll just ask Him to heal me.) Yes, we’ll keep on asking. I’ve been troubled with not knowing what will happen. But it’s not for me to know. Colossians 3 says “Set your hearts on things above, where Christ is seated at the right hand of God.” Psalm 27 says “Wait for the Lord; be strong and take heart and wait for the Lord.” So that’s what we’re going to keep doing – we’ll set our hearts on things above and wait for the Lord. He knows what to do. (Ok. That’s what we’ll do.)

Tough day, lucid night

This was the toughest day for Susan in a long time, with still lower levels of alertness, memory, strength, and stamina. I’m glad we didn’t have anywhere to go today. Our friend Gladys Halma visited this morning – Susan was barely awake when Gladys arrived at 9am. After breakfast, Gladys helped Susan play a game of solitaire, a vision therapy activity that helps her with scanning and sequencing. Later, after Susan’s shower and long afternoon nap, her mom arrived to take Austin to finish his DMV written exam. (He passed!). Helen brought us some early dinner afterward since the kids were leaving for Adam’s final choir concert of the year. Susan and I had to forego this one. After dinner it took me at least 10 minutes to convince Susan to take the 8 or so essential pills she needs morning and evening. It was hard to get Susan to concentrate on what I was saying and to respond. It upset Helen deeply to see her daughter doing so poorly. I know what it’s like to feel helpless about a situation you desperately want to change, but I can’t imagine a mother’s pain.

Somehow, Susan and I can manage to have lucid, loving conversation when we’re lying in bed at night after prayer before she goes to sleep. In the dark room with our heads touching as we hold hands and share her pillow, a bit of our old life returns. Her voice sounds the same as it always did. I can’t see her scar, short hair, or puffy face. There’s no deep dialog. We just exchange simple, caring words, so it feels the same as before she had cancer. But the fact of it is never far away. The uncertainty is a burden. I said,

I’m glad I have you. But I don’t know how long I’ll have you. (I don’t know either.) Are you scared? (No.) That’s good. Are you satisfied? (Yes. I have you.) I’m glad we have each other.

Slo-mo and chemo

I need to help Susan with everything right now. Dressing, bathing, brushing teeth, having meals, getting around the house – every activity is broken down into steps that require great amounts of coaxing or me to do them for her. She’s on super-slow motion, 6x, 10x. I’m adjusting to her slower pace and trying to be patient during the 10-20 second intervals before she acknowledges what I’ve said. Sometimes it doesn’t stick and I have to repeat it. Now I know why Dr Liau says brain cancer is a devastating disease. Fatality is one thing, but the loss of function is a killer too.

We arrived at UCLA and shuffled into the Jonsson Cancer Center waiting room about 15 minutes late, a normal thing these days. We didn’t get called in for Susan’s blood draw until almost 2pm, which delayed her 2pm infusion until lab results came in. Her blood work was ok, so she started her infusions about 3:30pm and had an exam by Dr Nghiemphu. She noted Susan’s swelling and disorientation (didn’t know the day, month or date), and suspects decadron is the culprit. As much good as the steroid does for brain swelling, it can cause degenerative symptoms once the swelling abates. It’s a balancing act. She reduced Susan’s dose from 12mg to 8mg for now and moved up her next MRI by two weeks to 6/23, after having two doses of Avastin.

Regression

Susan’s exhaustion and weakness intensified today. I stayed around this morning to assist and observe her, trying to determine what level of help she needs. I’m not comfortable to leave her with our friends from church since they’re used to doing errands, activities, and exercises with her and not the greater demands of lifting and hygiene. Susan is not like she was two months ago, at least for now. Her condition became more evident when Sheryl Vos arrived for her Monday visit and took Susan to the chiropractor. Susan could not get down our steps without help and could barely lift herself into Sheryl’s SUV. I called Dr Nghiemphu while they were gone. As I described Susan’s state of being, we tried to reason together whether her symptoms are coming from tumor growth or drugs. She really needs to see her for a proper evaluation, but she thinks it can wait until Wednesday at the time of the next infusion. She said I should not reduce her decadron dose yet. Meanwhile, I need to attend to my wife at home. I called the office to clear my schedule until later in the week.

Inspiration

Today was a wonderful day of worship and blessing. After awesome music, communion, and Bill White’s sermon at the 10:30 service at Emmanuel, we felt beautifully connected to the Lord and the Body of Christ. We headed to Casa Gamino with the boys after church for some of our favorite Mexican food on the planet. Gloria Gamino and her family were having lunch with Bob & Kristin Feenstra when we arrived. We saw Jerry & Sheryl Vos there too. Dear Gloria surprised us by having an appetizer sent over – chimichangitas, which the boys loved and devoured. Then she surprised us again by taking care of our entire meal! What a precious gift. We feel so loved.

The Inspirational Choir brought their 7th annual Night of Inspiration on Sunday night. Words can’t describe it, but “phenomenal experience with God” comes pretty close. I think I sang in each of the prior six worship events, so it was a new experience for me to be sitting in a pew next to Susan instead of swaying with the choir. I had intended to sing this year, but I needed to focus on Susan. I realized again how much she’s enabled me to do ministry in the past by taking care of family and home. We arrived late (I don’t think we’ve been anywhere on time the past few weeks) and were graciously provided two seats in the crowded sanctuary – on the aisle, with perfect viewing for Susan. I started weeping by the second song, overwhelmed by the goodness of the Lord in worship as the magnificent choir, soloists, and musicians entered in to the presence of God. I felt the weight of our circumstances lift as we worshiped and enjoyed the freedom of praising the Lord with other worshipers going all out. I’ve missed that. I still sang with the choir – I just faced the other direction. Our guests from Faith Inspirational MBC in Compton who also led in worship and dance provided another shared experience with our brothers and sisters from outside our walls. They helped bring the night’s “Change the World” theme into reality. The night was rich – we left feeling terrifically spent and satisfied.

Disoriented

Susan slept most of the day today. She was more disoriented than usual and seemed to need nap after nap. I checked on her frequently while doing work around the house and yard. At one point mid-morning, I walked in and found her in the kitchen. I think she’d been up for a short while. I asked her if she had a good nap. She said she was just about to lie down. Apparently she forgot she’d just slept for several hours. If she needs to sleep, I’ll let her sleep.

Hard days and determination

These have been hard days for Susan. She’s struggling with various levels of exhaustion, disorientation, and ability to do basic tasks. I relate her present symptoms to last week’s chemotherapy and hope they won’t last. Our chemo care notebook from UCLA mentions a term called the “nadir,” the low point in a person’s blood count following chemotherapy when symptoms are at their worst. (It seems the term comes from astronomy and is the opposite of an object’s high point or zenith.) It’s hard to know what that point is for Susan at this time, whether we’ve seen the nadir or we’re still getting there. For now, it’s just hard. She went to bed the other night wondering if it was dinner time or bedtime. Yesterday she couldn’t remember whether our dog Daisy is a male or female. She got stuck several times doing tasks, wondering if she added detergent to the laundry load or staring at the butter, the jam, and a piece of toast, not sure what to do next. The scary thing is to realize she’s been standing there 10-15 minutes trying to figure it out. Last night she caught herself (fortunately) after mixing up the liquid hand soap and the toothpaste – reminiscent of last August. And she’s tired. She woke up from her nap yesterday and fell asleep again while folding laundry. It’s hard because she knows she’s not doing well and is frustrated that she can’t help it. Still, Susan’s try-try spirit inspires me. I’m thankful for the stability of her will.

Monday morning our friend Floyd DeBoer called to let us know his wife Joanne had passed away at 4:30am and is now with the Lord. Her battle with brain cancer intensified over a short period of time as the remedies of surgeries, radiation, and chemotherapy did not stop her tumor’s aggressive growth. We share her family’s grief over her death as well as relief that her struggle is finished and she is in heaven. Susan and I are so grateful to have been able to walk with Floyd and Joanne along our brain tumor journeys and see how the Lord accomplished a redemptive work of faith in them. It has been beautiful to see them deepen in their knowledge and trust in Jesus, who won our victory over sin, death, and hell. These brain tumor experiences are life-transforming for everyone; but the in past few months, God brought the DeBoers and us closer to Him and helped us all be better prepared for heaven.