Archive for the ‘Psychological Aspects’ 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: http://www.ambassadorbiblechurch.org.

How It Began: Part 4
February 20, 2011

From James:

This is the latest in a series of posts describing the events leading up to when this blog began.

“If we keep the tumor in, you will die. If we take it out, you will die.”

It wasn’t the most elegant way to start a consultation, but so began our first meeting with a brain surgeon at Georgetown Hospital.

I have to admit that I was in awe of the guy. I mean, he was a brain surgeon after all. So Young, on the other hand, was horrified.

It was a brutal way to make a point, but the doctor was trying to say that he wanted to surgically remove the tumor but could not remove it all because of its location in the brain. He estimated that he could remove 60%.

“There is a case similar to yours,” he continued. “A patient we treated, a law student here at Georgetown, in fact, had a similar tumor — similar size, similar location. Another doctor here operated on him, removing perhaps 80%. After surgery and radiation, he is practically cured. He is now continuing his studies… With assistance.”

I didn’t want to ask what “with assistance” meant.

The doctor went on to list the risks of the surgery: stroke, paralysis, more vision loss, loss of speech, loss of motor ability, death. So Young became increasingly horrified, focusing a great deal on the “death” side effect. It was clear that some impairments were likely. Death was a slight risk as he described it, no different from most other surgeries.

The doctor walked us over to a computer showing the MRI.

“It is quite large,” he said. “Six centimeters or so.” He went on to qualify it as larger than a golf ball. Perhaps the size of a field hockey ball, which of course we had no familiarity with.

So Young asked the doctor if he believed in miracles. He looked down and shook his head gravely. Later, So Young told me she wished she had said that she believed in miracles and that he would see one this time.

When we left the meeting, So Young was very disturbed, but we decided to move ahead with surgery anyway given the urgency of the situation. We could cancel or reschedule later while we investigated other options. So Young very adamantly wanted to pursue a second opinion. Naive about such things, I did so to humor her, not knowing how differently things would turn out had we not done so. This was the best hospital in the area, after all.

I sought the second opinion from another doctor at Georgetown, based on a tip from a friend who said that the best surgeon there had a “French name,” although she couldn’t remember precisely what it was. I called the doctor with the most French-sounding name I could, not knowing that the doctor she was recommending was really the first one we met with.

This misunderstanding turned out to be a strange kind of blessing, because the second doctor was a brilliant communicator, able to explain everything clearly and put us at ease with the “resectioning” procedure — removing, he said, possibly 80% of the tumor. He was in fact the very surgeon who had operated on the law student.

His nurse, however, was confused that we were seeking a second opinion from Doctor Number 2.  Despite his terrible bedside manner, Doctor Number 1 was the best brain surgeon at Georgetown — “Mr. Brain,” she called him.

Reassured that removing the tumor surgically was the best option for So Young, we felt more peace about Doctor Number 1 and did not cancel surgery with him. A bad communicator but a great brain surgeon. It was God’s will.

A day or so later, I got a call from an old friend from college while I was rushing out of the house to pick the kids up from school. He had a brain tumor a few years ago, surgically removed at Georgetown. He ended up with impairments that seemed to be evidence of amateurish work by his brain surgeon. Who was his brain surgeon at Georgetown? Doctor Number 1.

“Don’t go to Georgetown,” he said. “Stay away from that doctor. In fact, if I were you, I would stay away that hospital altogether.”

I had to end the conversation abruptly. What was I supposed to do with that information?

<< Part 3 | Part 5 >>

First Week After Radiation
February 11, 2011

“‘I will not leave you as orphans…'” — Jesus, John 14:18

From James:

This was the first full week without radiation. (Radiation ended on February 2.) We are adjusting to a new routine at home. The trip back and forth to Baltimore made us long for the way things were before the diagnosis. Well, I suppose we would long for those days regardless, but it is comforting to have a routine that does not involve getting irradiated.

So Young is resuming activities that she hasn’t been doing regularly in quite some time. Since treatment has ended, she plays a very active role in getting the kids ready for school every morning. She has started making everybody’s breakfast and packing lunch for them. I help, although I have to admit that I am now spoiled in this regard. I drive the younger kids to school, and Mom picks them up. So Young often makes dinner for the family, but I am making dinner more often now and am actually excited about the opportunity to cook more.

We are still receiving meals — twice a week or more — from generous neighbors, friends, and family. My work bought us a number of frozen meals from Let’s Dish that we are eating as well.

This week was rather busy, with So Young spending time with friends on most days. One difference between now and just after the diagnosis is that we don’t worry as much about her being home alone. In fact, she enjoys it, because it gives her an opportunity to rest and organize things (she has become a big organizer). She also tries to get a run in every day. Training for the half marathon starts February 21!

So Young is in good health generally. Her major symptoms are vision loss from the tumor  and tiredness from the radiation.

Her vision is still quite bad. She can’t drive (of course) and struggles to read and therefore usually doesn’t try to. There are signs that her eyesight has improved, however. With effort, she can read words with relatively small fonts. She can cook, although identifying the “done-ness” of meat is hard. My mom and I insist that So Young’s vision has improved, but So Young still thinks it is because she is just adjusting to her condition. She says that in the middle of her eye there is “static” and that there are spots of darkness. She says it’s sad but tries not to complain, which really is true. She might get frustrated, but she doesn’t whine about it at all. We are hopeful that in few months her vision will be restored.

So Young takes a nap every day if possible. When she can’t, she feels tired, and there is a cumulative effect if she lacks rest over a few days. The steroids she is taking also (paradoxically) keep her up at night. (One praise is that So Young is weaning off the steroids, which have helped in many ways but also have bad side effects.)

A lot of people ask how the kids are doing, and frankly they are doing great. There was  period where we had some difficulty, but the structure that my mother provided, along with firm discipline, resolved the problem for the most part. I don’t know that there are no psychological effects in the children, but they seem just about the same as they were before the diagnosis.

One quick anecdote to show how we’ve been blessed in this situation. I’ve told a few people about this. We have received a lot of money from our friends at Ambassador Bible Church and my workplace. We received a generous amount before, all of which was used to pay doctor’s bills. (I only use the money for So Young’s medical treatment.) More recently, I was taking an inventory of the amount I was about to pay, essentially outflow from my bank account to the various healthcare providers. I then added up how much I had received from the church and work: precisely the same amount I was about to pay to the doctors. If that isn’t a sign, I don’t know what is. It is as if God is saying, “Yes, I know this is hard, and sometimes you might feel abandoned, but I love you and am with you. You are not alone.”

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 >>

How It Began: Part 1
January 20, 2011

From James:

It occurs to me that many people reading  this blog aren’t aware of what happened before the biopsy (when this blog began), so I have decided to record it here for those who are interested.

Some of what is written in this particular post may sound very personal, but please be aware that we write with a purpose in mind. We realize that many people are going through personal and emotional difficulties similar to we have gone through. We want you to know that you are not alone.

So Young was having vision problems for at least two months before she was diagnosed with a brain tumor. The problem was that we assumed — and inadvertently convinced our doctor to assume — that it was a side effect of antidepressants and not anything more serious.

We had been having marital problems for over 5 years. We sought help from four counselors during those years, attended support groups, participated in a marriage conference, and received a great deal of help from our wonderful church family. But so many years passed, and justified hurts seemed to take on a new dimension, as if there was something else going on within So Young beyond our history and circumstances. In hindsight, we realize that the mood changes So Young was going through were at least partially a result of the brain tumor, but at that time everyone assumed it was depression. It may have been both.

On her counselor’s recommendation, So Young began (very reluctantly) taking the antidepressant Lexapro, and it made an enormous, positive difference in her life. She was always concerned about the side effects, however, and when her vision started to deteriorate, we soon became convinced that Lexapro was causing it. After an optomatrist and ophthalmologist confirmed that nothing was wrong with So Young’s eyes, her doctor recommended getting off the drug.

So Young’s counselor, Hailey, became our hero. She recognized So Young’s symptoms as being extreme and atypical for Lexapro, so she insisted that So Young’s doctor take action. The doctor conceded by providing a referral to a neurologist.

The neurologist, a very gentle and intelligent man, asked So Young a battery of questions to identify symptoms of a more serious problem with the brain — peripheral vision loss, loss of balance and motor function, etc. — several of which are indicative of brain tumors. So Young exhibited none of these symptoms. But her vision loss was obvious and acute.

“I don’t think it is anything having to do with the brain,” he said. He ordered an MRI as a precaution. “Severe vision loss” was what he wrote on the order. It was the first time I had seen those words associated to what was happening to her.

“Severe?” I thought. That was the doctor’s assessment. It was true that she couldn’t read pretty large letters close up. She wasn’t driving anymore. Also, she appeared to have lost some ability to identify colors. Had we been taking it seriously enough?

We scheduled an MRI for November 12, 2010.

Part 2 >>

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.