Archive for the ‘Sovereignty of God’ Category

Steroids, Headaches, and the Purpose of It All
March 13, 2011

From James:

Today may be So Young’s last day on steroids. She has been taking some pretty high doses over the past few months to reduce the swelling in her brain caused by the radiation and the tumor itself. She weaned off to the point that today she took only half a pill (1 mg). Tomorrow she will take none, unless the doctor orders otherwise.

Yesterday, we attempted to run a long run together (5 miles) while Mom took the kids shopping for spring clothes. So Young said her head was hurting beforehand, and then as she started to run, with each step her head hurt, so we called it off for her safety. She said she had similar headaches prior to radiation, which really means that she had them prior to being on steroids, so this could mean that she will resume steroids after I call Johns Hopkins tomorrow, although perhaps such headaches are not a problem. I’m not sure.

She has had two very bad episodes of headaches twice so far: once on the morning before she met with her neurologist (pre-diagnosis) and once on the afternoon before the biopsy was performed. They were quite severe — debilitating, I would say — and caused by intracranial pressure (ICP), which is pressure in the skull caused by the presence of the brain tumor as it blocks the normal flow of fluid. She was essentially crying in pain and vomiting as a result of these. We’re keeping a watchful eye to ensure that these don’t happen again. If they do, I believe they will eventually recommend a shunt to enable the normal flow of fluid and relieve the pressure, which is quite common. It is also possible that they will recommend that she up her dose of steroids again, at least in the short term. So Young hates the steroids because they cause her to gain weight, but if that is what they recommend, there is nothing we can do about it.

Her eyesight remains essentially the same. As usual, I still contend that it is getting better, and she adamantly insists that she is just coping better. For example, she read the fortune from a fortune cookie the other day. That’s progress, right? She said they are so hackneyed that she guesses at the words and gets them right. One day at church I asked her if she could see the words projected on the screen at the front of the church. “There are words up there?” was the response.

Meanwhile, we are adapting well to our new routine — me taking the kids to school in the morning, Mom picking them up in the evening, etc. Friends often visit So Young, although not every day, which is good. I work from home Wednesday afternoons, which So Young appreciates. We will continue to receive meals twice a week through March.

The hardest part right now for So Young is the emotional dimension of things. When she is alone, she sometimes feels lonely and sad. When she has a lot of visitors and is busy, she is easily exhausted. We are trying to achieve an elusive balance between the two extremes. (Please don’t read that as a plea to stop visiting! So Young really wants visitors. She’ll say “no” if she needs to rest.)

So Young asks why all of this is happening to her. She wonders if there is a God-ordained purpose to it. We always conclude that there is a purpose but that it may not be knowable yet.

Our pastors are preaching through the book of Romans, and So Young feels that the last two sermons in particular have been an answer to her prayers, in which she has asked God why this is happening. The first of two about suffering is already available on the ABC web site. The second should be available soon:


How It Began: Part 3
February 4, 2011

From James:

This is the third in a series of posts describing the events leading up to the biopsy, when we began writing this blog.

After the initial diagnosis, the hours and days that followed were intense and emotional. First, there was a deep sense of shock and sadness — a feeling that So Young’s life was being cut short. We cried and prayed a lot. Second, a sense of urgency took over me. I somehow realized that time was of the essence in terms of selecting a neurosurgeon and pursuing the next steps, whatever they might be.

Just after we got off the phone with the neurologist with the news, I immediately called my mom, who I swear rushed over in 10 minutes for what is normally a 20-minute drive. She was there with us during the hardest time, just as she always is.

I also called Pastor Kenji, who I’m sure was dumbfounded but prayed with us over the phone.

Shannon arrived home shortly. It was a strange situation. She had a slumber party scheduled for that night for her twelfth birthday, but obviously the moment was too intense for us, and there was no way we could handle that. We had to cancel it quickly, which meant that we had to tell her about So Young’s condition. She is bright and asked a lot of questions. We tried to keep it vague but could not. I just remember sitting in her room, telling her the best way I could, and then her sitting on the floor and crying. Nothing prepares you for that.

Dad soon came over, too. We had pizza, and Mom and Dad left.

So Young and I cried ourselves to sleep that night and woke up crying the next day. It’s hard to describe the emotional intensity of that time. When you receive a diagnosis like that, it is as if you are already grieving, but of course you don’t really know the outcome. Also, we became very reflective about life, particularly our life together and as a family. We cried a lot about the kids and the potential of them losing their mom. We cried about losing each other.

Underneath it all, when you go through this kind of thing, you get a very heavy sense of the sovereignty of God that we are all subject to. He can allow whatever hardship in our life that He wants, whenever He wants to allow it. We can’t predict or understand it completely. Still, through all of this, we have realized not just his autonomy and power, but also his love for us.

<< Part 2 | Part 4 >>

A Comedy
January 6, 2011

“‘Who of you by worrying can add a single hour to his life?'” — Luke 12:25

From James:

I have had a cough for two weeks now, so I went to the doctor yesterday after an evening of feeling very bad and having a fever. I insisted on getting a chest x-ray, because I suspected pneumonia. The doctor reluctantly wrote up an order for the x-ray, saying that I probably just had allergies. I got the x-ray yesterday afternoon.

As soon as I arrived at work this morning, I got a call from the doctor’s office. The receptionist said they needed me to come in to “discuss the results” of the chest x-ray.  They were mysterious about it. I asked if it was pneumonia. She wouldn’t answer.

When I finally met with the doctor, he was somber. He rolled his chair up close to me.

“I’m glad you convinced me to get that chest x-ray. I’m sorry to have to tell you this, but you do have something in your lungs, and it’s not pneumonia. It’s a 5 cm mass of some kind, which is pretty big.”

That measurement — 5 cm — has a bad history with me. It’s roughly the size of So Young’s brain tumor.

“Couldn’t it just be pneumonia or bronchitis?” I asked. I felt as if I was pleading with him for hope. I couldn’t believe I was having this conversation.

“No, definitely not.”

We discussed what it might be. If it is lung cancer, it is most likely primary (that is, not resulting from cancer in another part of the body). It could also be secondary, which would mean that it is indicative of late-stage cancer of another kind, such as melanoma (skin cancer), kidney cancer, bladder cancer, or a handful of other kinds of cancer. My family has a strong history of melanoma. It could also be some kind of fungus, but that is rare. He said that the mass wasn’t there when I’d had a chest x-ray two years ago.

“I have seen miracles both ways,” he said. “I have seen cases like this turn out remarkably bad and deteriorate quickly, and I have seem them turn out remarkably good.”

He prescribed a CT scan to get a closer look at the mass. I think his last words to me were “good luck.”

I called my mom first. I was crying within about a minute. She asked what she could do. We couldn’t think of anything right away but to pray. She had a lot of people praying for me throughout the day. I called Kenji next. He is lucky because he’s way up there on my list of people I call when I have bad news. He prayed for me, too.

My parents and I agreed I shouldn’t tell So Young until the CT results were in.

I spend a lot of the day waiting. Waiting is the worst part of almost everything in life. It tells you a lot about your heart, because when you wait, you think.

So Young always says she doesn’t worry for herself dying, but mostly for me and the kids. I understood what she meant. For a Christian, dying is a comedy, because life ends with a wedding, but I thought about the tragedy it would be for the kids to lose both parents. I thought about whether I had lived my life right. The verdict was inconclusive. I felt that I could have done a lot more for others.

I talked to Dad briefly while I waited for the CT scan. He is laid out with pneumonia. He said he thought I just had what he had and not to worry about it. That’s the other thing I learned: I worry about it. I immediately jump to the worst case.

For the rest of the day after the CT scan — picking up the kids from school, shopping for Shannon’s party supplies — I walked around with death-shaded glasses on. Everything took on a philosophical hue: all my bad habits in relief as a “bad way to live your life,” every interaction taking on new importance.

I wondered if I had some new perspective on So Young’s everyday life. I realized that in thinking about my own death, I was thinking too much about myself and not about her. How could two people face death together and not be completely self-absorbed? I resolved to live for her and others, even if I was dying.

And all that before I knew the results of the CT scan.

So Young, of all people, called to tell me the results while I was out with Shannon at Party City.

“The results of your CT scan are in. You have pneumonia.”

So Young didn’t know about any of it. She had no idea how it felt to hear that news.