Last night we took Amy to church. One of the kids asked, "What if she starts hallucinating and causes a commotion?" "I guess we'll have to take her out of the service." Unfortunately, about half-way through the 2nd hymn she started to say random things loudly and wanted to lie down, so I took her out to the car to sleep the rest of the service. Unless she markedly improves, we won't be able to take her to church again in the future. She looked really alert and smiley in yesterday's post's photo, but she is confused 95% of the time now, has difficulty seeing or understanding speech and has random outbursts about Hillary Clinton, wax paper, imaginary extra children (one named Lisa), pharmacies, etc.
"I want to go to an Easter sunrise service!" demanded Amy. Hmm. Easter sunrise services (where one has a service outdoors to catch the sunrise) haven't really caught on yet in Arequipa. Okay. We can have our own. There is a 'Mirador' (a lookout point on top of a mountain) about 3 miles from our house, so yesterday, on my run, I went to check it out to see if one could drive up it and park someplace close to the top. It looked good. Next, how would we decide if Amy was feeling able to go without everyone waking up early? Here's the plan: If Mom is alert enough to go, I'll get her dressed and loaded into the truck and I'll wake everyone else up at 5:15 am. If I don't wake you up, I decided not to go, so you can sleep in. But at 4:50 am, Amy was awake, so I got her ready and we went. At the top of the mountain I asked the kids, "Why do they have Easter Sunrise Services?" "To feel spiritual!" "To assuage guilt!" (I have no idea where my kids get their cynical side!) "Probably for some. But for others it is a chance to imagine the women going to the tomb on Easter morning in the dark and learning the world-changing news that awaited them." Instead of preaching about the first Easter, we read from Luke as I didn't think there was any way to improve on the original story. Then we waited until the first beams of sunlight came through a small valley in a nearby mountain. I had never seen a sunrise from a place where there was such an instantaneous change from predawn to 'flaming with light'. It reminded me of Wesley's hymn, "And can it be that I should Gain" when he writes:
Long my imprisoned spirit lay,
Fast bound in sin and nature’s night;
Thine eye diffused a quickening ray—
I woke, the dungeon flamed with light;
My chains fell off, my heart was free,
I rose, went forth, and followed Thee.
Happy Easter from the Georges!
Considering Amy's fall last night, she's had a pretty good day. During the night she was pretty miserable, awake most of the night complaining of her head hurting. But today she's taken just a few pain meds and the swelling went down tremendously. (the benefits of being on high-dose steroids) Last night Sarah told me to wake her up when I wanted to go running and she'd sleep next to Amy until I got home. (yes, my kids are as great as they sound like, but I might be biased!). On my run, I thought a lot about what I should have done differently to keep Amy from falling. It was my fault, even if I didn't cause her to fall, since it is my responsibility to make sure it doesn't happen. I don't want to beat myself up over it, but I need to be more careful and I should have put us all on higher alert when we noticed that she was more confused yesterday.
I wrote a blog entry about how well Amy was today, but as I was in the middle of writing it she managed to fall down and hit her head. For a little over a week she has either been too weak to get up or at least asked for help if she wanted to get up. I even stopped tying her to myself in bed at night. But tonight she somehow managed to get herself up, go to the bathroom in the dark and then she fell down, hitting her head and giving herself the biggest goose-egg I've ever seen, plus bruising her elbow and ankle somehow. It's really frustrating and part of me wants to get mad at her, but my rational side knows that she just can't remember that she can't walk on her own any more. This could be a long night, especially when the pain meds wear off.
Yup. Not much else to say. Ate breakfast at the table. Napped. Took medicine for headache.
When Ben came down for breakfast he asked, "Why did you set 6 plates at the table?" Amy hasn't been able to join us for 4 days because she has been so incapacitated by her condition, but this morning, she woke up alert, hungry and had some strength in her legs. "Mom's going to eat with us!" I said, eliciting a surprised smile from Ben. I helped her walk down the stairs (instead of carrying her), and she ate a whole waffle with blueberries and drank two cups of coffee (which didn't stop her from napping from 8 until noon). The roller-coaster ride continues, but we give thanks for these good days.
First of all, if you are a medical person, don't let the title panic you. Yes, Amy is breathing in a Cheyne Stokes pattern, but at the same time she is talking and eating again and even realizes that she is Cheyne Stokes breathing. If you aren't a medical person, Cheyne Stokes respiration is a breathing pattern of people that are close to dying. It is characterized by quick breathing followed by a long gap of not breathing. In severely ill patients it happens right before they die. When my father died, he started having Cheyne Stokes breathing a couple of hours before he died. Brain tumors can also cause Cheyne Stokes respirations. In Amy's case, she takes 3 deep breaths and then doesn't breath for about 25 seconds. This continues all the time. It's a bit freaky for caregivers, since one wonders if the patient is still alive during each cycle.
Despite this, Amy is having a good day. She's not rubbing her head complaining of pain hardly at all. She's eaten the most she has since Friday. She's talking quite a bit, though she's pretty confused, which can make for interesting conversations!
Last night, Amy slept well (with the correlate of: Allen slept well). Amazingly enough, she woke up this morning much more lucid, able to talk a bit, able to sit up and even stand for a bit! Her head is hurting very little. She has already drunk about 500ml of my home made electrolyte drink this morning. Sarah got her to eat two pieces of apple this morning, and a bite of toast, which isn't much but it's something.
My sister Carolyn's brother-in-law Duane died yesterday from the same type of brain tumor that Amy has. Our suffering isn't unique.
After my mom died a year and a half ago I thanked my sister Carolyn for doing the majority of caring for her. I used the word 'burden' and she quickly corrected me, "It wasn't a burden. I was the lucky one. I got to spend time with her." At the time I thought it was a great tribute to my mom: Her children saw it as a privilege to take care of her during her dying days. I now know even better what she meant. I've received a lot of emails commending me for stopping most of my responsibilities and dedicating my time to taking care of Amy. That comment initially surprised me. My initial thoughts have been: "Well, of course. I signed up for 'In sickness or in health'," or "Did I have a choice?" I guess one sees the statistics that up to 40% of spouses are abandoned in times like this and one realizes that we have a choice, but the other choice is reprehensible. As a missionary, I probably am more able to make this choice since people still support us even though I'm not 'working' full time at the moment. I suppose most others can't just quit their jobs to take care of their spouses and still pay the bills. Being a physician helps, though there isn't much that I'm doing that non-medical people couldn't do. I probably have a higher tolerance to seizures and vomit and I don't have to ask someone how much the next dose of pain meds should be. I have a thin spouse. If she were 200 pounds I wouldn't be able to care for her well. And being healthy myself makes carrying her possible and stamina gained from marathon running helps me to change bedding at 2 am. Our hope of a painless eternity with Christ makes being even-keeled emotionally possible.
So I guess I am lucky. I can spend this time with Amy when any one of these variables could make it so I couldn't do it. I'm the lucky one. I get to spend time with her.
Amy has gotten weak enough that she prefers to be carried up and down the stairs. She's light enough I can do it, though if there is one of the kids nearby, I have them help carry her. Today she vomitted twice. Once was right as we were starting lunch, so I felt sorry for her and our guest that had brought us strawberry shortcake for dessert (that's how one remembers which is 'dessert' and which is 'desert'; strawberry shortcake has two 's').
update 8:29pm CST
Amy has really gone downhill today. Vomiting a lot. Not talking. Fidgeting a lot. Part of me suspects this is the beginning of the end, but she was similarly bad about 4 weeks ago and rebounded, so we will wait and see. Spent a lot of time sitting with her with the girls. Sweet times of fellowship, despite the sadness.