Archive for April, 2011

A Dream
April 30, 2011

From James:

When So Young woke up this morning, she told me about her dream.

In the dream, she woke up from a night’s sleep and found that she could see perfectly. Her eyesight was restored. She ran out of the house and told everyone.

She went to see her friend Grace Oh and told her, “Grace! Your dream came true! I can see again!” (Grace recently dreamed that So Young could see again.) They screamed and embraced, jumped up and down.

She continued to tell everyone: friends and neighbors, people at church. She received a myriad of reactions, but overall everyone was amazed at the miracle.

So Young woke up early this morning, when it was still dark, and realized it hadn’t really happened. Her eyesight hadn’t changed. She was afraid of when the daylight would come, and she would encounter her profound loss of vision again in its fullness.

The dream affected her greatly. She cried as she told me about it. I gave her theological reasons why we suffer: for our sanctification, because of the Fall, because of the flesh. Jesus suffered, too.

She wanted to know why her in particular? I tried to explain there was no reason except to glorify God. She said she was losing patience with God. When would it end? My explanations didn’t seem to work too well, so I prayed for her.

This afternoon, So Young slogged a 9-miler. It really took a lot out of her. “I feel like somebody beat me up,” she said, resting in bed afterwards. But then she said she realized something as she ran. She realized that God’s Spirit was telling her, as she plodded along, that without this suffering, this loss of sight, she wouldn’t see as much as she has seen of Him.

20/20: A Coincidence or a Sign?
April 28, 2011

From James:

I went on the Web to get registration information about our half marathon, which is in about 2 weeks away, and found out that So Young’s bib number for the race is 2020.  (The bib is a piece of paper pinned to your clothing during a race to identify yourself.) That’s a pretty interesting number for a person whose eyesight is 4/200 at last measurement, vs. 20/20.

We’re thinking of good slogans for our T-shirts.

“I’m not slow… I just can’t see where I’m going!”

“Running/walking/crawling by faith, not by sight?”

So Young continues to train as best she can despite her tiredness and feelings of weakness. She is doing very well under the circumstances. As long as there’s no bus to pick us up at the back of the pack during the race because time has run out, we should be fine.

By the way, for any of you MCM Half runners out there: Do you know if there’s a bus for this race? We couldn’t find anything about it on their site.

Christos Anesti! And Therefore I Will Rise
April 24, 2011

From James:

Happy Easter, everyone!

Easter Egg Hunt

To get ourselves into the Easter mindset, So Young and I spent a couple of nights listening to Tony Campolo’s famous sermon, “It’s Friday, But Sunday’s Coming.” It has a broad application outside of this holiday. We highly recommend it:

http://www.tonycampolo.org/mp3/Its_Friday_But_Sundays_Coming.mp3

The kids have been home all week, so it has been very busy for So Young. I took Tuesday off to spend some time with the family and attend to some errands. I took everybody to the dentist, and then we went to Old Town Alexandria to exchange a pair of So Young’s running shoes. We then rushed back home to get ready for a ballet we attended that night, Sleeping Beauty, performed at the new Hylton Performing Arts Center by a Russian ballet company.

The highlight of the evening’s performance was our punchy kindergartener loudly commenting that she could see the male ballet dancer’s “bottom” (he was wearing tights) and lamenting what she perceived to be the immodesty of Sleeping Beauty’s costume. So Young has wanted the girls to attend a real ballet for years, and I think she was satisfied that we were able to do so.

The Ladies at the Ballet

So Young and the girls went on a picnic on Wednesday with friends. Sandy very graciously drove them all, and they had a great time. On Thursday, Mom took the girls shopping for Easter dresses, etc., one of their all-time favorite activities. Friday was sort of a “day off” for the Gage ladies, as by that time they needed a spring break from their spring break.

This week was a test, in a sense, of what the summer is going to be like for So Young and the girls. So Young is still struggling greatly with fatigue, which doesn’t necessarily affect anything when the girls are at school and I am at work. With the girls home all day, however, So Young is too tired in the morning to do much. Shannon was a trooper and helped out with the younger ones during the morning hours. I don’t have any concerns for the girls under So Young’s care and with Shannon’s help, at this point.

So Young’s appetite still isn’t great. I would say that she is still eating maybe one meal’s worth of food each day. She has aversions to food, but she also has cravings. They aren’t consistent, so we can’t plan around them. Still, she seems to be eating enough to be healthy, although she lacks the energy she used to have.

Unbelievably, we are still receiving meals from our church that end up feeding us perhaps four nights per week. Mom also prepares at least one meal for us a week, as well, so we are doing very little cooking.

Today we had a wonderful Easter with our church family. The mood of Easter can be so pure, unlike Christmas, which seems tainted. Here we are thanking God for the great miracle He has done for each and every one of us, and how there is hope beyond these frail bodies and this short time we have together on earth.

During a special musical performance, a member of the praise band sang the Chris Tomlin song “I Will Rise” with exceptional beauty. I remember playing this song for So Young as we drove to the start line of the MCM Half last year, the same race we are running together in May. The music itself really does rise, but even more so the lyrics lift you up. I cried as I sang along this morning (I wasn’t supposed to sing along), because it is such a beautiful picture of what things are going to be like for us some day, restored from these fragile bodies, into God’s presence, and all because Jesus himself rose up.

I Will Rise
by Chris Tomlin

There’s a peace I’ve come to know
Though my heart and flesh may fail
There’s an anchor for my soul
I can say, “It is well.”

Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles’ wings
Before my God fall on my knees
And rise
I will rise

There’s a day that’s drawing near
When this darkness breaks to light
And the shadows disappear
And my faith shall be my eyes
Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles’ wings
Before my God fall on my knees
And rise
I will rise

And I hear the voice of many angels sing,
“Worthy is the Lamb”
And I hear the cry of every longing heart,
“Worthy is the Lamb” (x2)

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles’ wings
Before my God fall on my knees
And rise
I will rise

Pastor JP  preached eloquently about Thomas, who doubted and had to see Christ’s wounds for himself. Thomas’s conclusion, as ours: “My Lord and my God!”

It’s our prayer that this post finds you full of hope today. There is much to hope for, even when on the face of it, your circumstances may say otherwise, like it did for Thomas and the other disciples before Christ rose. Your present circumstances and even your past don’t determine who you are. There is a future that is more important, that defines who you are if you place your hope in God. It’s a future without death, pain, failure, disappointment, or sin, where we will live restored. This is eternal life, and it starts now for those who believe.

Eat… Or Else!
April 17, 2011

From James:

For almost two weeks now, So Young has had a severely diminished appetite, but it is slowly getting better. At first, she was eating a couple of snacks a day (no meals) and drinking liquids. Now, I would say she is eating perhaps one meal’s worth of food each day.

This is likely caused by several things: adrenal insufficiency, Keppra (an anti-seizure medication), and late side effects from radiation. Adrenal insufficiency occurs when you are on steroids for a long time. Steroids cause your body to produce cortisol, a hormone that makes you hungry. When you stop taking steroids, your body can respond by ceasing to produce cortisol, so you lose your appetite. You are essentially unmotivated to eat.

So Young has something called “focal seizures” every once in a while. In her, they manifest themselves as mild visual and (less often) auditory hallucinations. Focal seizures can be precursors to more severe seizures, which is why So Young is on Keppra. One of Keppra’s side effects is a loss of appetite.

Radiation is well-known to make foods taste funny. So Young experienced this slightly during treatment, when she developed an aversion to chocolate, of all things. Now she thinks many more foods don’t taste quite right, although she has cravings that we have to keep up with as well and can be the only thing that keeps her eating from time to time.

The nurse threatened to put So Young back on steroids to jump-start her appetite if it doesn’t improve, so she’s highly motivated and gradually getting better.

So Young’s diminished eating has had an effect on her ability to run and on her already severe fatigue. (I don’t think that the Keppra and radiation help, either.) You can’t easily run 6 or 8 miles if you have no fuel to do so, but she is doing it.

On Friday, I tried to call her from work at our home number and her cell many times with no answer for an hour and a half, so I became worried. I called Mom and asked her to check on So Young. Mom graciously dropped everything and drove to our house. Meanwhile, So Young finally called me. She was doing her 8-miler in training for the half marathon. We were worried for the worst, but she was in fact exhibiting the opposite — very vigorous health, despite the circumstances.

Mom called and said she found her. She said So Young refused to let her drive her home. “You married a strong lady!” Mom said. Amen to that! Keep running, So Young!

The Darkness Will Not Be Dark
April 9, 2011

From James:

The other day, I saw So Young sitting at the piano, her face right up to the sheet music, trying to learn a new song. You have to understand that So Young doesn’t really play the piano. She took lessons as a kid, but she didn’t stick with it. Still, she is musical and plays the violin and guitar, so she can read music and has somehow retained just enough knowledge to attempt to play the piano once in a while. But she can barely see the sheet music now.

So she is sitting there, straining to read the notes to a song she’s never played on an instrument she doesn’t know that well. She’s playing slowly. Her fingers are on the wrong keys at first, and it doesn’t sound that great, so my immediate thought is, “She can’t do that. Why is she trying to do something she can’t do?”

I had to stop myself.

It occurred to me that she was doing exactly what she should be doing, and exactly what all of us should do. Like in so many other situations right now, she was doing more than what seemed possible and realistic, more than what was reasonable or expected.

Here’s a lady who can barely eat right now (a new development — she has lost her appetite), can barely get out of bed, but then goes out and runs a very slow 2 or 4 or 6 miles or more, straining against fatigue with “heavy legs,” training for a race that’s going to take place three months after radiation for a brain tumor. Here’s a lady who still cooks meals for the entire family, even though she needs help to measure ingredients and determine if the meat is fully cooked. (We eat sushi every night — intentionally it or not! That’s a joke.)

Last night she said that she has learned something about herself. Before all this, she was working hard on her own, pushing herself because she had something to prove — something about how she was strong enough, capable enough to handle life. She could do it on her own. Now she knows she can’t. Without a doubt, she says, she is running far beyond herself, and He is there with her.

Psalm 139:7-12 says:

Where can I go from your Spirit?
Where can I flee from your presence?
If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
If I rise on the wings of the dawn,
if I settle on the far side of the sea,
even there your hand will guide me,
your right hand will hold me fast.

If I say, “Surely the darkness will hide me
and the light become night around me,”
even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.

(I recommend reading the entire psalm. It’s worth it!)

Audrey "Playing" the Piano, 2005

Audrey “Playing” the Piano in 2005

It’s Actually Not Called “Brain Cancer”
April 8, 2011

From James:

So Young has a brain tumor, but it would generally not be referred to as “brain cancer.” I didn’t learn this until a few months ago, when I asked one of her doctors, and he set me straight. I think it’s pretty natural to think “brain cancer” when you hear that somebody has a brain tumor, but not all brain tumors are accurately described as brain cancer. Here’s an excerpt from an e-mail I wrote last night describing the difference:

It’s kind of a technical distinction, but basically there are four grades of astrocytoma brain tumors. Grades 1 and 2 are slow-growing and never referred to as “brain cancer.” Grades 3 and 4 are fast-growing, and some medical people call them brain cancer, but not everybody in the field thinks that language is correct. Some people call grades 3 and 4 cancer because they spread throughout the brain (but never anywhere else in the body). Others disagree and say that cancer by definition is a disease that spreads throughout the body, which is never true of tumors that originate in the brain. Spreading within the brain doesn’t count, they say.

So Young has a grade 2 astrocytoma. It may become a grade 3 or 4 some day, but God willing it will not. Grade 2 is still dangerous and life-threatening, but it is not called brain cancer.

This is not to be confused with the “stages” of other types of cancer. There is no notion of stages of brain tumors. However, some types of cancer, in “stage 4,” can spread to the brain. So Young doesn’t have this type of brain tumor, since she doesn’t have cancer elsewhere.

Quick Update Re: Headaches
April 4, 2011

From James:

After a scary Friday evening where her headache seemed to be getting worse and she appeared to be approaching a big, pressure-induced headache, So Young had no headaches Saturday, Sunday, or today (so far). I called the nurse today, and she said it seems like So Young might have successfully weaned off steroids, which, she said, is “hard to do.” We shall see. I’ll be monitoring things and checking back with JH every two days. The main, consistent symptom right now is extreme tiredness, in addition of course to the ever-present (and stable) vision loss. On Saturday, her light sensitivity became worse and she was generally miserable, but that was only for one day. Anyway, thanks for your prayers.

I could have written an entire post about everything that happened Sunday, but perhaps I’ll save that for another time.

Joshua 1:9

Two Months After Treatment
April 2, 2011

From James:

First of all, the kids are great. Their parents are still learning to be parents, but the children are doing a stellar job. They have a new routine that involves a great deal of Daddy and Nanna time, which the girls don’t seem to notice all that much but Mom and I enjoy. Lindsay had to drop ballet when So Young was first diagnosed almost five months ago because of the crisis of the moment, but otherwise they continue with their activities and are doing well socially and in school.

Sensitive and volatile, Lindsay was the one we were most worried about early on. Much has improved. Mom has taught us a lot about how to respond with the right amount of structure, discipline, and compassion. Although she isn’t doing ballet now, she is the most active of the girls, as part of the running club,  piano, and chorus, and volunteering at the school library three times a week. Here is a picture of Lindsay at last week’s chorus concert, smiling because music is her gift.

Lindsay at Chorus

Shannon continues to be bright and ambitious, constantly reading and laboring on her many writing projects. She will not settle until she is a real “published author” (no vanity press, mind you), and I believe that given her talents and drive, she someday will be. Also, her sense of humor is incredible: She laughs at my jokes!

Audrey is a typical kindergartener, except that she was born with the “Command Gene” and is pretty sure she runs the house. She isn’t afraid to talk to anybody or tell them what to do. This is counter-balanced by her calm, levelheaded constitution and enthusiasm for housework or work of any kind.

All of that is to say that the girls are fine. They don’t ask too many questions about Mommy. They pray for her. Outwardly, they don’t seem worried. They are mostly concerned about her loss of eyesight, which has direct, practical implications for them. Shannon has asked some more penetrating questions. I can only respond by saying we don’t know the outcome and therefore can’t assume the worst about tomorrow. Today has enough worries of its own.

So Young weaned off steroids entirely a few days ago after a previous, failed attempt to do so. Now she is getting headaches again. I called Johns Hopkins yesterday afternoon. They said it could just be a symptom of a sort of withdrawal from the steroids themselves, like when you stop drinking coffee and get a headache. They decided we should wait over the weekend and see if the headaches get better. If they got worse, it could be edema (swelling of the brain), caused by either the radiation, although it seems too far after the treatment for it to be that, or the tumor itself.

Last night, a few hours after I talked to JH, So Young appeared to start developing one of the very severe, throbbing headaches that is a sign of edema. We have been through these before, and they are a nightmare. I didn’t want to mask the headache because I wanted to see if it really was one of the “big ones,” but I also couldn’t stand to see her in so much pain, so I gave her Motrin, and it went away. The bottom line is that she may end up back on steroids or, eventually, with surgery to install a shunt, as I’ve said before. Please pray for So Young, as these headaches are painful and scary for her.

I was talking to my friend KT the other day about how I’m surprised that I’m not more emotional about this situation all the time. Yes, I have my moments, but for the most part, I try to be objective and clear-headed about it. I speculated that it is because I can get highly compartmentalized: strong emotions over here, practical, “get it done” mindset over there, and never the twain shall meet. Hilariously, KT suggested that I get another compartment to mediate between the other two.

So while I would ask that you pray that I get another compartment, I’ll just ask that you pray for wisdom and a lot of strength.