Archive for January, 2013

January 25, 2013

From James:

So Young’s doctor predicted a couple of months ago that, barring a miracle, she would “slowly shut down.” Most recently, she seems to be getting weaker physically, and she is having more incidents of choking. The short-term memory loss continues to be a problem, along with disorientation and the inability to find words. She was always a great conversationalist, able to speak comfortably with anyone and listen well. Now she hardly talks.

When she does get chatty, however, she asks a lot of questions. She always asks where the girls are and if “Nanna” (my mom) is here. She asks if it is Sunday a lot. (She has no real sense of time anymore.) She also asks bizarre, nonsensical questions. This is different from not knowing the right words. She has some concept in her mind that makes sense to her, most likely because she is imagining something that isn’t real, so she asks about it. “Where are the men that run around?” “Are you going to put up the bales?” On and on almost every time she talks to me. They can actually be pretty elaborate. I play along, because I have learned that if I act like I don’t know what she’s talking about, she gets angry, because of course I should understand. I don’t think that other people encounter this very much, because with them, she mostly answers yes and no questions, stays pleasantly quiet, etc. With me, she is all questions.

The hallucinations continue. She saw a “scary image of a girl” next to her the other day. I told her not to look over there. Yesterday, she saw a bunch of children in the room, little boys. I asked her what they were doing, why they were there, but she didn’t know. I told her they are probably angels. Today she was staring upward as if transfixed. I asked here what she was looking at, expecting an outlandish explanation. “The ceiling,” she said.

Her long-term memory appears to be diminished. This is new within the last couple of weeks. For example, she doesn’t remember my birthday. She can’t reliably remember the names of her daughters, having guessed wrong or been unable to recall them at all the last three times I asked her. That could of course be anomia, so perhaps a better example is when I was playing a couple of songs that have had a lot of meaning for us, especially early in our relationship.

I played Barber’s Adagio for Strings for her. I asked her if she remembered it, and she said yes. I told her that she played it in orchestra in high school. Does she remember what instrument she played in high school? “All of them?” she guessed. She played the violin and was quite good at it. I played our wedding song, Grow Old with Me. I asked if she remembered why the song was important. Does she remember dancing to the song with me? When did we dance to the song? “Valentine’s Day?” Another guess. We danced to that song at our wedding. I encounter examples like these daily.

I don’t often cry about our situation, but I wept while the songs played. Something about listening to a song that so beautifully walks between joy and sorrow like Adagio or that is so ironically hopeful like Grow Old, contemplating memories of the days when she was whole, and looking at her lying there diminished by disease, caused me to feel the depth of what we have already lost. It is these juxtapositions that hurt the most, like when Shannon came upstairs crying yesterday because she had heard an old voicemail on her cell phone, “from when Mommy could talk.” I listened to it, and it made me cry, too.

So Young in June

My Beautiful Wife About Seven Months Ago

I want to thank everyone again for all of your support of us, emotionally, spiritually, financially, and otherwise. The outpouring has been overwhelming in a good way. Someone recently pointed out that kindness isn’t the right word for it. It is love.


Ending Treatment
January 9, 2013

From James:

Today, I asked So Young what my name is. “William James,” she said.

“OK, what is my last name?”

James,” she said, insistently.

“Oh, OK. So my full name is ‘William James?'”

“Yeah. William… A… James.”

So Young and I share the same last name. She just doesn’t remember it.

Yesterday, she literally slept 23 hours. She was awake for more hours today (four so far), but after her visitors left yesterday, she fell asleep and only woke up for two thirty-minute meals. Her sleep varies, but it always far surpasses a healthy person’s sleep.

I give these very recent examples to illustrate the point that So Young has been through a lot of treatment so far and seen no results. I know that I am not the only one who has wondered why, if the treatment is not working, we are continuing with it.

The answer is that we are not. Johns Hopkins called today and said that they will not treat So Young anymore for her brain tumor. The tumor is inoperable, but she underwent the lifetime limit of radiation to the brain at Johns Hopkins. After the recent regrowth, she went through several draining rounds of chemo. And all the while the disease progressed. It seems like I am reporting some new symptom, procedure, or medical crisis weekly. I am continually surprised, but unfortunately the hospice people are all too familiar with what is going on.

I don’t have a lot to say about this news other than that it saddens me and confirms what I was already thinking.

Here are a few things I ask of anyone reading this blog entry:

  • Please don’t tell So Young. It’s strange, I guess, to have a “public secret” like this about someone, but it doesn’t do her much good to know it at this point, particularly in her current mental state. Also, don’t talk about it with me when she is around.
  • Don’t approach me with advice about a cure you believe in or heard about somewhere. It is unhelpful at this point. Trust me, you are not the only one who has thought to do this, although every miracle cure is different, and I have been told of many.
  • Don’t stop praying for So Young. Maybe only a miracle can save her at this point, but miracles are not beyond God’s grasp.
  • Pray for the girls and me as we grapple with So Young’s ongoing illness and its ramifications for our family. It is incredibly difficult to deal with.
  • Don’t give up hope! Even if the worst happens, remember that we hope in God. As believers, we face a common destination, and I know that So Young in particular will receive a great treasure there whenever God takes her, along with a completely restored body. I want to live a life like hers, poured out for others and living for an eternal hope.

Wipe Away (Revelation 21:4)
January 5, 2013

From James:

Short Version: We’ve had to alter So Young’s diet to avoid more choking incidents, since she aspirated a second time on Thursday. This may be a sign of further disease progression. She continues to be in cognitive disarray.

Long Version:

I think that the title of my January 2 post minimized the situation a bit. The “health event” of that day (So Young’s swallowing problem) has turned out to be more serious and longer lasting than I originally thought. She had a second choking and aspiration episode the next day, on Thursday, January 3. She was very distressed, but at least I had the medication I had used the previous day and knew to use the oxygen machine. She was on oxygen for most of Wednesday and was exhausted. She slept through lunch on Wednesday, and for dinner she could only eat her mashed potatoes and cranberry sauce and struggled greatly to swallow small pieces of meat.

On the recommendation of John, our hospice nurse, So Young started on a diet of pureed food only Thursday morning, which I am loosely interpreting to mean “mushy food.” Also, we started thickening her drinking water and most other liquids. I grind up her medicine and administer it to her mixed with honey. These changes seem to have made eating and drinking easier for her, although she still has episodes of almost choking. It seems that a large part of the problem is water itself, which causes many more choking incidents than you might think. John said that we will keep her on this diet unless she “bounces back.” He said that this is a normal and expected part of disease progression.

So Young slept most of Wednesday and Thursday. She was awake more on Friday, but most likely that was because we had a lot of visitors on that day. On Friday night, after a long late evening nap, she was unusually chatty for a couple of hours, but almost everything she said betrayed the cognitive dissonance that is going on inside her: unawareness of time despite many reminders, anomia, nonsensical questions that showed a basic lack of understanding of what was going on around her. She was similarly alert but incoherent today, at one point for example asking me, “Where is James?” I told her I am James, and she said, “No you aren’t!” She said that we should get a dog (we just got one a few months ago), and she went on and on about this until I brought the dog to her. She tried to eat a piece of paper towel and mistook a stuffed animal for a water bottle and started “drinking” from it.

She also seems to be hallucinating occasionally. She will see a little boy in different places around the room, or this morning, a “scary mask.” Then she will say, “Now it’s gone.” She isn’t afraid of them.

As I’m writing this, I realize that some people who have seen her only occasionally or on a good day (or hour) may think I am exaggerating. She is alert sometimes. She performs well with simple questions that don’t require much analysis. She is polite and recognizes people. Sometimes she speaks clearly and strings together a pretty good series of thoughts. She laughs at jokes, funny and unfunny. That doesn’t change the fact that she wasn’t this bad cognitively a month ago. My job is to observe the bad parts that, if ignored, put her in more danger than “thinking positive.”

So Young asks for “forbidden” foods a lot now. When I reiterated this morning that she can’t eat bagels at the moment, she said, “You just crushed me.”

I got a little teary-eyed, because I feel bad having to turn her down when she has so little already.

Then she said, “Wipe away.”

“Wipe away what?” I asked.

Wipe away. All the dead stuff will be gone. And then I’ll be a new person and can eat all that stuff. Right?”

Health Event Du Jour
January 2, 2013

From James:

So Young is having more difficulty swallowing these days, as I have said in previous posts, and this has made swallowing pills particularly difficult. This morning, she tried to swallow a pill and threw up, and some of that (or maybe water or food) ended up in her lungs, which is called “aspirating.” Over the next few minutes, her breathing became increasingly labored and loud. It’s hard to describe the sound, but it was a very unpleasant one, as if she was drowning or breathing through water. She said she was having a hard time breathing.

I called the hospice nurse and asked if I should dial 911, but he said he would come over immediately. He got her on oxygen, which helped, and eventually we got her some medication that has also helped. She was pretty exhausted by this crisis and slept all day. I’m hoping that this is a short-term, passing issue, although of course I will be grinding up pills from now on and will remain vigilant when she eats. There is no suggestion yet that I should change her diet. My concern is that almost every little crisis so far has turned out to be either a sign of progression or a cause of additional progression.

Meanwhile, So Young’s Marine Corps Marathon buddies Len and Sara travelled from great distances today to visit her. She slept during most of their visit, and while she was awake she hardly said a word to them, which is typical of her these days, but they were gracious and gave her much-needed human interaction from people she greatly respects, which I think is a lot of what she needs these days, regardless of the “quality” of the interaction from a conventional standpoint.

Sara and Len

I also put up one of her Christmas gifts today, which is a rack to display her various race medals. Each race was no small accomplishment for her, a reflection of a time of extremely vigorous health and her inner qualities of self-discipline and perseverance. She earned every one. I want her to be able to see them every day.