Mostly stable

In her second week at home under hospice care, Susan is mostly stable. Depending on when you might visit, you may come away impressed that either she’s doing well or doing poorly. She’s not well oriented to time or place and still has lots of trouble finding words, but she continues to display remarkable grace and strength. Her hospice nurse, after noting her increased weakness since last week, commented how well she’s coping.

A few days ago, I asked her if she thinks she’s getting weaker or stronger. She said, “stronger.” If nothing else, her strength of will to overcome is phenomenal. This morning I asked her if she has peace (yes), if she’s happy (yes), if she has joy (yes), and if she’s worried (no). Since then, she’s slept most of the day after the return of severe headache and having pain meds. So it goes.

I arranged to return to the office three days a week and to work remotely from home the other two, though I’m clearing the way to take leave as needed. It’s been hard to balance work and home life such as it is; but I’m working it out.

We continue to be greatly encouraged and loved by our family and friends. People express their care in so many meaningful ways, with delicious meals, heartfelt cards, lovely flowers, and warm visits. I know so much of our peace comes from so many prayers. I find the Lord to be a particularly worthy refuge, as he has assured us he’ll be. All of God’s promises that he’s with us, that he saves and heals us, that he protects us; that  our lives are wrapped up in his have taken on new significance now. Our journey has been really hard and recently became harder; but we thank God for bearing us through it.

Okay at home

Susan has been home from ICU nearly a week and is doing okay. She’s had phases this week ranging from bright and energetic to sleepy and less responsive, with periods of severe headache. Although she’s had a slight decline the past couple of days, her overall improvement from seizure activity last week has been a relief.

The level of activity at home is most unusual for us with nurses, caregiver, social worker and chaplain from hospice along with lots of family and friends, including a couple of brothers who trekked separately from Colorado. So many enjoyable visits along with being Susan’s nurse and trying to meet project deadlines each day for work have been a challenge for me. It’s meant late nights working, hard-won rest when I hit the pillow, and a blur of a week.

It’s all a big adjustment for us, compounded by the uncertainty of Susan’s condition, but over it all rests a great and wonderful peace. Our home has become a sanctuary for our family, a place of visits, meals, laughing, prayer, and joy, where those who visit bring us blessing along with their good will, meals, and flowers. We have the knowledge of God’s presence with us that sometimes we feel, and always know. I’m conscious of the gift of time we’re enjoying, and thankful to God for keeping us.

Home from ICU

It’s been good for Susan and for us to have her home. She arrived Saturday evening following deliveries of medical equipment and medications, and has settled in to her bed in our den where we all spend most of our time. After sleeping or being minimally responsive all week with seizure activity, she barely awoke during the entire ambulance ride, transfer to her bed, and nurse’s exam.

At first I wondered how a guy should treat his wife on hospice and was unsure what to do. Like suddenly I’m a rookie. But when she woke up later, since it’s all about her comfort, I realized it’s simple – see what she wants. We started with sips of water. She drank a few ounces for the first time since having her feeding tube removed, swallowing easily and coughing only a little. Later she was a little more alert, so I asked her if she was hungry. She was, so I offered her an Ensure shake. She drank about half and went back to sleep.

Sunday we continued with water. Then she drank the rest of the Ensure plus another bottle, followed by some applesauce. A trend was on. I’ve expanded her soft diet today with hot cereal, fruit cups, scrambled eggs, banana, and tonight, mac & cheese plus green salad.

Susan’s strength and energy for life are amazing. With no seizure activity, she’s been sleeping less and more responsive while awake. She’s gone from no responses to yes/no responses to sentences. I’m sure she's been spurred on by stimulating visits with groups of family and friends. Our home is nice for her, with fewer disruptions and the usual household clatter. This morning she was well-rested, lucid and just the right amount of sassy.

Her UCLA neuro-oncologist and social worker were thrilled to hear the news today; and her hospice RN case manager was impressed with what he saw. Of course, we know things can change quickly, but we truly celebrate that Susan has perked up so well.

We know that people are praying for us, so thank you. We feel and appreciate such support. We pray that God will be exalted and that he would give us all transforming experiences as we trust him.

A transition

After a tough week for Susan dealing with more serious complications and me realizing her disease continues to progress, we recognize the time has come to suspend the intensity of hospital treatment and bring Susan home for palliative care under hospice.

I’ve talked with our kids and family, and I met this afternoon with Susan’s neuro-oncologist and our specialist social worker. We had her brought back to UCLA this week so we might know whether she may recover to the point she was even two weeks ago when she was last discharged from here. Her level of seizure activity now seems to show she’s reached a limit she’s unlikely to overcome.

Our goal now is to make her as comfortable as possible, have her home with family, and neither hasten nor delay the process. There’s always the prospect that a person on hospice care can rally back and resume treatment, so we’ll watch for whether Susan does that. At this point in her journey, she’ll show us what she’s ready to do; and we’ll cooperate.

The idea of making such a transition has been hard for me since we’ve been together so long and fighting together so long for her recovery. It’s been a sad week. Crying comes easily and sometimes unexpectedly. The thought of being without Susan breaks my heart; but the thought of her being in heaven with the Lord revives my spirit. I pray for God’s continued wisdom for us this week, for his continued peace to attend Susan, and for him to be exalted in all things.

Meanwhile, we give thanks to God that our son Austin and another driver were only slightly injured in a head-on collision last night that totaled both cars. He was on his way home from church so we could talk as a family about Mom going on hospice. We’re grateful for well-made cars and what I imagine were mighty angel arms keeping each of them protected in their seats. When this swarm of stuff is over, that will be okay too.

Lexie, Austin and Adam are some of the finest people I know. As they go through one of the hardest things a person can face, they’re displaying strength, courage and maturity. Still, it’s one of the hardest things a person can face. We all appreciate your prayers.

ICU sequel, day 3

Today Susan’s status remained about the same overall, although her blood pressure has normalized, so evidently the proper steroid dose helped. Even so, the attending physician said her seizure activity continues. The ICU staff is focused on stabilizing her with a batch of meds and continues to watch for improvement. Under different circumstances, they might use a procedure with deep sedation for several days to break the seizure cycle; but in Susan’s case they’re concerned she might lapse into a coma.

Dental hygiene

She’s still sleeping much of the day and is sometimes more responsive than others during her few waking phases. One highlight of the day today was having the nurse brush Susan’s teeth. I’m sure it felt good; and the nurse used a special toothbrush attached to a suction tube that reminded me of Susan’s dental hygiene practice.

We’ve been reading daily from “Streams in the Desert,” the remarkable century-old collection of devotionals written by people who’ve gone through stuff knowing God’s grace. Ken and Lisa Korver blessed us greatly with it nearly six years ago as our journey began. I’ve seldom read anything like it that can touch a tender area related to our trials and soothe it at the same time.

Today's reading is based on Matthew 10:27 and says what God tells us in the darkness we should speak in the light. The darkness of our trials affords a unique opportunity for God to speak comfort and peace directly into our circumstances, whispered from his heart into our ears. Proclaiming that comfort to others not only helps them, it helps us, and it means our suffering is not wasted. I guess that’s why I write.

Steroid reset

Seizure activity continued today as Susan cycled through a couple of brief, waking periods and otherwise slept deeply. She’s on four anti-epileptic meds to stabilize her, which the attending neurosurgeon believes are starting to work.

A lucid moment.

Last night when I asked about her steroid dose, I was alarmed to learn she was on just 2mg of Decadron instead of the expected 16mg to 24mg – I’m not sure how far down her taper schedule had gotten in Long Beach. But for Decadron, that’s a big drop. We don’t know at which point the error occurred, at her transfer to from rehab to ICU in Long Beach or from Long Beach to UCLA, but the drastic change likely contributed to some of the brain swelling, seizures and low blood pressure we’ve been seeing.

Even so, I wouldn’t attribute all of her symptoms to the steroid drop since her status had been declining earlier. The plan now is to wait 48 hours from starting her proper dose to re-evaluate her status. Her MRI results showed that her bleed has indeed resolved nicely and her tumor is mostly stable. We’ll wait a few days before making decisions about her treatment options.

Needing care in ICU

After arriving at UCLA last night, Susan had a neuro exam that led to her most lucid moments of the day. She was alert, responsive and more conversant. We took advantage and made calls to family who were grateful to hear her voice.

A CT scan overnight confirmed there was no new brain hemorrhage. Evidently, the staff at Long Beach had seen existing blood from her event last month and thought it was new – an example of her need to be at UCLA for continuity. The new scan shows the bleed actually has resolved quite a bit, so that’s one less complication.

Today, Susan has been mostly unresponsive and sleeping. They connected a continuous EEG this morning; and she actually had a seizure event during an exam by the neuro team. The fact that she’s been cycling between cloudy and lucid moments daily makes her neuro-oncologist suspect this seizure activity has been going on for a while. It may be caused by general brain trauma or by tumor growth, so an MRI this evening should provide a vital update.

We’ve been concerned since yesterday about low blood pressure; but Susan’s responded to meds that push it up. Meanwhile, she had a feeding tube inserted since seizures can affect her ability to swallow. The ICU staff needed another vein in addition to her port catheter to administer meds, so this afternoon they inserted a central line. In spite of so much turmoil, she continues to fight.

We’ve had some amazing encounters with godly and loving people lately. I was enfolded by the usual flurry of hugs and prayers at church on Sunday. Yesterday, a couple of Long Beach doctors went out of their way to offer kind words and advice. Her ICU nurse there truly ministered to us with loving care and compassion, making a hard day easier. When we arrived at UCLA, the ICU staff here greeted us warmly, with both joy and concern. Susan was last here over a week and a half ago; but the charge nurse came in and said she’d thought of Susan just that morning and prayed for her. We’re so blessed.

I had remarkable experience yesterday as the ambulance crew readied Susan for transfer from Long Beach Memorial to UCLA. I left the seventh floor ICU and encountered a blur of images on my way out. I passed the East ICU wing where I was with Susan the morning of July 5, 2007, after her first brain surgery. Brimming with memory of that day, I descended the stairway and passed the waiting room a floor below where I’d spent the night of the 4th on a lobby seat not designed for sleeping. 

Continuing down the stairwell, I passed the floor where Susan had her mastectomy in 2006 and the floor of the neuro unit where she spent several weeks in 2007 after ICU and then a short stint later in 2008 with back surgery. I passed the cardiac floor where I stayed a few days in early 2011 after having fleeting chest pains chalked up to stress.

I passed the nuclear medicine floor where I had been tested for infertility in 1988 and got disheartening news before we prayed and conceived our girl Lexie. Then I passed the floor of the birthing center where Lexie and Austin came into the world and went on display behind baby gallery glass.

Finally, I descended the extra-long flights to the first floor and passed through the hallway toward the lobby. To the left was the chapel where 20+ people gathered to pray during Susan’s July 4th brain surgery. Then I entered the large waiting area, a site of vigils, laughs and prayers with loved ones and sober conversations with neurosurgeons. I thought of the ER down the hall and our visits there for everything from Austin’s broken wrist to my gall bladder attacks to Susan’s urgent brain tumor events.

Recalling them in the very places they happened, I realized that single building had hosted some of the most significant events in our family’s experience. I took in the perspective and its fullness, which seemed to happen fluidly, floor by floor, revealed by an unseen hand. I realized God can display a catalog of life’s events because he’s been with us for each one. “Teach us to number our days that we may gain a heart of wisdom.” Psalm 90:12

Transferring to UCLA

We've arranged for Susan to transfer to ICU at UCLA for continuity of care. The neuro team at Long Beach is also highly skilled and caring, but they don't have the full set of her records needed to make the best, most informed decisions.

She's had two CT scans and an EEG since yesterday and had her shunt tapped this morning to test spinal fluid. The new brain hemorrhage is serious but not overwhelming, so she's tired and in stable condition.

We have comfort in her returning to the doctors and staff at UCLA who know her well, and even more profound comfort in God's presence with us during a difficult time. We appreciate your prayers.

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In ICU with another hemorrhage

When Susan's status declined again this afternoon, a CT scan revealed what appears to be a new hemorrhage. She was moved to ICU from the rehab unit and will be transferred back to UCLA most likely tomorrow. Thank you for praying.

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Back to acute rehab

After transferring from UCLA on Friday evening, Susan is back in acute rehab at LB Memorial. She had physical, occupational, and speech therapy evaluations on Saturday and an otherwise restful weekend.

She had a good first day of treatment according to her nurse during my evening visit. She'll have 3-6 hours of multi-disciplinary sessions daily; and I’ll find out soon how long they recommend she stay.

The events of the past month have sapped her strength, stamina, and ability to converse much. She’s alert and responsive when she needs to be, but when it's time to rest, she sleeps deeply. It’s been about four years since her last similar setback, and if that experience is a reliable guide, it will take her months to get beyond her physical weakness and cognitive fog. Still, we’re grateful for good progress so far and trust God to help us with the steps along the way.