Rehab therapy, more chemo – a good week

Susan completed her first full week at Broadway by the Sea and is receiving excellent care. The nurses and assistants provide compassionate help and attend well to Susan’s needs for medication, hygiene, and comfort. She has mild back pain most of the time, but she tolerates it well. I visit her once or twice a day and happened to be there earlier this week when she was having a physical therapy session. She used the automatic exercise bike that works legs and arms at a programmed speed and records the patient’s own exertion separately for left and right sides. It’s a useful tool for muscle strengthening and allowing therapists to track her progress. They also applied electrical stimulation to her arms and legs to help build muscle fiber. I watched as the team helped Susan stand from her wheelchair and transfer her weight from side to side while holding parallel bars, then sit down slowly. She still needs “max assist” right now, but has already made progress from last week.
We made a jail break yesterday for our first field trip to UCLA for chemotherapy. She tolerated the long ride well; and the chemo session went smoothly. We’re thankful for no apparent tumor growth from June to July – she’ll have her next MRI in four weeks. It was wonderful to spend a whole day together.

I’ve begun to learn what loneliness feels like since Susan has been at the rehab hospital (and will be for weeks) and I’m spending more time at home and at work again. It’s not that I’m alone – I’m just lonely for her. My longing for Susan feels like there’s a torrent of water rushing through me, through my heart, and I’m being emptied but not filled up again. Yet the peace of God is a great comfort, as is seeing her each day.
Overall, I’m thankful for how things are working out, how God has provided. Her spinal fracture could have been much worse; and I believe she’ll heal quickly. The event of her fall actually brought about the transition from UCLA to rehab, something Susan needed even before she fell. The good thing now is she’s getting relief from the muscle decline brought on by hydrocephalus and decadron, while she’s mentally able now to participate in therapy and get stronger. Susan feels lonely too, but she’s doing well overall. In another sign of God’s provision, I recall Susan telling me that when she was a girl she enjoyed being by herself in her room or in the bath, listening to music on the radio. As I left her alone in her room with radio music on earlier this week, she was content. I realized how well God has prepared her to handle this season.

Susan is still funny. I read her the next day’s menu and asked her if she likes the food. (Keep in mind this is hospital chow, institutional style. I think it’s just tolerable and I’m glad I don’t have to eat it. Also note that she’s stuck in bed and couldn’t walk away if her life depended on it.) She said she likes the food, and “it’s one more reason to keep coming back every day.”
Another time I was talking with Susan by her bedside when a nurse charged in for a second, one of dozens of daily interruptions when one of the staff comes in and needs to do something. As we turned toward her, the nurse said, “Oh, I’m just checking on you, I’m doing rounds,” and left. Susan sort of rolled her eyes and scoffed, “At least she’s not doing squares.”

Skilled nursing and rehab, finally

After a spate of false starts, Susan finally was transferred to a skilled nursing and rehab hospital late yesterday. It’s called Broadway by the Sea, located at 2725 E Broadway in Long Beach (between Redondo and Cherry). Susan is in Room 33. The five or so other hospitals we tried were at capacity for patients with acute needs, had no available bed, lacked a contract with our health insurance company, or had an undesirable reputation. With several additional days at UCLA to work the process, accomplishing the next step is a huge relief. We are most eager for her to begin her therapy so she can gain strength and return home.

Yesterday was Susan’s birthday, an unusual one under the circumstances. She ended the day getting settled in her new location and being surrounded by family, cards and flowers. She even enjoyed a slice of fresh peach pie. Life is a gift.

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.

Improving slowly and gradually

Susan has improved gradually since last week’s lumbar puncture for hydrocephalus and is somewhat stronger, more alert, and more responsive. We haven’t seen the dramatic rebound she experienced last November, but I’m grateful for the progress so far. She’s still pretty confused most of the time about where she is and what’s going on, and she’s doing her best to make sense of things. I’ve noticed she can pull her wits together for a period of time when needed, a taxing effort that requires extra rest afterward. We’ll be back at UCLA this week for another MRI, clinical exam and chemo treatment.

These months since Susan’s tumor progression was diagnosed in April have been especially hard. Two of our brain buddy friends have died since then, following two others since last fall. The circumstances seem to point to an inevitability that no one wants to accept. But I continue to receive encouragement from the Lord in a variety of ways to hold fast to Susan’s healing. Paul’s prayer for the Ephesians (1:18) speaks to me also, “that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in the saints, and his incomparably great power for us who believe.” God’s Word is full of ordinary people who faced impossible circumstances and were challenged to believe what God said rather than what they saw. Even a partial list of these accounts can instruct and encourage us – Noah, Job, Moses, David, Elijah, Daniel, Nehemiah, Zechariah, John, Joseph & Mary, the Acts of the Apostles, and the dozens of people healed by Jesus. Trying to put ourselves in their place as they face their situations and see God intervene can help prepare us to face our own difficulties. Even so, I say facing our own trials is harder because we don’t know the outcome. But the fact is, neither did these who went before us. Like us, they had two things: their insurmountable circumstances on one hand and God on the other. It still comes down to faith – “Lord, I believe. Help my unbelief!” (Mark 9:24) We continue to trust God and know we’re in good company.

CT scan and lumbar puncture at UCLA

Susan was admitted to the ER at UCLA Medical Center yesterday morning for a CT scan and lumbar puncture (spinal tap). The head scan confirmed hydrocephalus, so neuro-radiologist Pablo Villablanca drew off about 30cc’s of fluid. Now that’s what I call a brain drain. We waited until about 9pm for initial lab tests that proved negative for infection. Overall, it was a great day since we were able to get after the problem after weeks of her languishing. Susan also had the benefit of being treated in the one-week old Ronald Reagan UCLA Medical Center. It’s been in the works since the 1994 Northridge earthquake damaged the old hospital, it cost over $1 billion to build, and is now the most advanced hospital in the country. Once again, we had a terrific experience with the caring professionals at UCLA and are grateful to have the best care available for Susan.

Meanwhile, the lab will grow cultures over the next several days to rule out a return of fungal meningitis. The continued hydrocephalus following last week’s valve adjustment confirms Susan’s shunt is blocked, so we’ll follow up with her oncologist and neurosurgeon soon and will probably schedule a series of LPs to drain fluid on a regular basis. Replacing the shunt will have to wait as long as she’s on Avastin since it causes bleeding and prevents having a surgery. By mid-day today, Susan was still very tired and profoundly confused. We certainly hope the next couple of days bring the dramatic improvement she experienced with November's hydrocephalus treatment.

No relief

In the three days since the valve adjustment on her lumbar shunt, Susan’s condition remains the same, if not slightly worse. She slept from about 3pm Thu to about 8am Fri – a span of over 17 hours with only brief waking periods with the desire to sleep some more. Yesterday as I was getting her up from her wheelchair she asked, “Am I alive?” Since she doesn’t seem to be responding to the adjustment, perhaps the shunt is blocked so the hydrocephalus persists. I’ve emailed her doctor and will watch Susan carefully tomorrow in case she needs medical help right away.

Recently, Susan has started chewing her pills instead of swallowing them. I cringe when she does it because some of them are designed to be absorbed slowly – plus they taste horrible. I try my best to stop her from chewing and wash them down with water. This morning she was doing it again. I told her to stop chewing and swallow water. She crunched each pill as I gave it to her. I would remind her to hold it on her tongue, to not move her teeth. She wouldn’t get it and would start chewing. As it went on, I spoke sharply and raised my voice –

Stop it! Stop chewing your pills! You’re supposed to swallow them! …Do you know why I’m speaking to you like this? (I’m doing something wrong with my medicine.) Yes, what are you doing wrong? (I’m letting the lighter parts go down first.) You’re chewing your pills when you’re supposed to swallow them. Do you understand? (Yes.) Here. Here’s another pill. Put it on your tongue and swallow it with the water. Ok? (Ok.)

More chewing. More sharp words from me as my frustration turned to anger. Now I was yelling at her.

I am so frustrated with you! Stop chewing your pills! You’re supposed to swallow them!

More chewing again. She just looked at me. I left the room not knowing what to do. I was fuming and helpless. I asked God to help me – I am helpless with this and don’t know what to do. I returned and explained again how frustrated I am that she was chewing her pills. I told her how angry I was. I asked her if she forgot how to swallow pills. She looked back at me with no expression. I realized she couldn’t help it. She really couldn’t. It broke my heart. I apologized with tears to Susan with tears for yelling at her. I’ve never yelled at her before. Not like that. I realize some couples communicate by yelling – but we never have. It’s just not us. Even after passionate disagreements (often about money) or the hard-working out sensitive issues in our marriage (we’ve had plenty), we always have made up quickly because neither of us can’t stand being out of fellowship with each other. As I cried, I told Susan how hard her illness is on her and on me and how desperately I want her to get better. I kept grieving for a few minutes as I cleaned up the dishes. Then I sat down with her again.

Do you know why I’m crying? (Over of the loss of your father.) Actually, my father is still alive – I just want you to get better, that’s all. I know you understand, don’t you? (She nodded.). Thank you for understanding. (You’re welcome.)

This is tough stuff. Tonight when I put Susan to bed, I lay my head on her pillow before we prayed.

What’s on your mind right now? (I just need to finish my job and then I can be done.) What job is that? (I need to deliver the thing I came here to deliver. Then I can go on.) What is it you need to deliver? (silence.) Susan? What do you need to deliver? (silence.) Did someone give it to you? (Yes.) …How can I help you do the job you need to do? (You can take an active role in it.) Ok, I’ll do that. I’ll take an active role. (Thank you.)

Susan’s words like these are so mysterious. I know she’s processing a lot while she sleeps – and she’s been sleeping a lot. I don’t know how much she really knows or how much she’s able to put into words. I know it’s a process. There is still so much that is hidden.

Shunt adjustment and a hopeful sign

Dr. Bergsneider adjusted Susan’s lumbar shunt to relieve her hydrocephalus today. There’s a valve about the size of a watch battery located under the skin in her right lower back. He found it difficult to position the magnetic adjustment tool over the valve and know for sure he changed the setting, so he did his best and sent Susan to have a couple of x-rays taken for confirmation. The x-rays showed the adjustment didn’t work, so he scheduled her for an afternoon procedure using a real-time digital imaging system called x-ray fluoroscopy. The instant feedback allowed him to place the tool in the right spot and know he had the right setting. Usually these are cranial shunts with the valve located under the scalp and are adjusted easily. With Susan’s lumbar shunt there’s no hard base under valve and lots of tissue around it, so he really had to push and prod to get it done.

He prepared me for the possibility that the shunt may be blocked, in which case today’s valve adjustment won’t help. If her shunt is blocked, it would be troublesome because a surgical replacement can’t be done when a patient like Susan is being treated with Avastin. It causes bleeding that prevents wounds from healing. The alternative could be a series of lumbar punctures (spinal taps) to drain the fluid manually, but even these could pose a bleeding problem. We didn’t dwell too long on these what-ifs. We’ll know within a few days whether her symptoms improve and will take it from there. We already had a hopeful sign this evening when Susan was more alert and spoke more than she has in weeks. Hopefully, the fog is lifting.