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.