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.
Yesterday I needed to take Paul to the RENIEC office, which is where every Peruvian (Paul is Peruvian because he was born here) has to renew his ID card. Since he is a minor, I, as a responsible adult, have to request the renewal, and I have to show my ID card to do so. Since my ID card is currently being processed, I have to show my passport. I looked in our safe. Not there. I looked in my briefcase, bookbag, inbox, outbox, floor around everywhere, on my dresser, desk. Gone. Ughh. A horrible sick sensation came over me thinking about the huge hassle lying in front of me to get a replacement passport. Police reports, trips to Lima, changing all the paperwork in process because of a new passport number. Uggh. I did find Amy's passport so I loaded her into the truck and took her along to the RENIEC office so that she could be the 'responsible parent' (In more ways than one!). Luckily, the RENIEC employee was the only other person in the office and the paperwork went smoothly. Even better, when we got home, Sarah found my passport in my bookbag in a hidden pocket that it had fallen into. I put it immediately in the safe and felt a huge sigh of relief!
Amy has gotten markedly weaker over the last few days. She wasn't able to go downstairs for breakfast, so had breakfast in bed.
This morning, despite getting her dressed, hair combed and teeth brushed, Amy was just too tired to go to our missionary team meeting. She really wanted to go, but has really gotten weak. She stayed home with Sarah and Adriana (our maid that comes on Tuesdays and Fridays) and I went to the meeting. Afterwards, I went to Maestro (ACE Hardware) to buy a flexible shower hose so that Amy can shower more easily. Arequipa has changed a lot since we came 16 years ago. I probably wouldn't have been able to have found such a thing back then.
At our team meeting I was given our mail that had piled up while we were in the States in 2015. This includes Christmas letters that friends sent us in December of 2014 that arrived after we left in January of 2015! so, 15 months later we got them! That's slow delivery!
Amy has gotten a lot weaker the last two days. This afternoon I had to have Ben help me carry her back up to her room after she half-heartedly played a game of Settlers of Catán with the rest of us. She might have to stay home from church tonight, as the entryway is a series of stairs, mostly without handrails. We could probably carry her in, but it would be a bit dangerous. Most of the time her headaches have been tolerable, but they fluctuate from no headache to being bad enough she needs Oxycontin.
Amy did go to church tonight. She was able to get down the stairs okay, but Ben and I had to carry her out to the truck. (There are advantages to having a teenage son who is into weightlifting!) Here's a picture of the stairs. You should have seen the pile of blocks we crawled down before we built the stairs a couple of years ago!
Amy has been feeling enough better lately that she went with me on my weekly visit to Alejandro yesterday. Alejandro is the 83 y/o amputee that I visit each Thursday to take him food and help clean up his room. It was Amy's idea to set a bucket with a spigot on a stand so that he can wash his hands and get a cup of water easily. He really likes it.
He has two wheel chairs, so we borrowed one for Amy while we visited. While they talked, I swatted about 50 flies.
My brother Lyle left last night. He said that he lost 19 pounds on the Peruvian weight loss program. Guaranteed results! Order now, operators are standing by!
Amy has felt pretty well for the last 3 days, taking pain killers only a couple of times per day. But she feels like her head is 'spinning' all of the time, which adds to her difficulty in walking. Thanks for praying.