Archive for February, 2011

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 >>

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Meditation on God’s Mercy
February 19, 2011

From So Young:

“The LORD’s lovingkindnesses indeed never cease,
For His compassions never fail.
They are new every morning;
Great is Your faithfulness.
‘The LORD is my portion,’ says my soul,
‘Therefore I have hope in Him.'”

— Lamentations 3:22-24

It’s been 16 days since my last radiation treatment. Praise Jesus! I’m trying to get back to living a “normal” life.

As I walk each day by faith and not by sight, I am constantly amazed at the God I serve. I see so clearly his tender mercies for me, especially when I don’t deserve it, when I slipped up and blew it in impatience, anger, frustration, etc.

Some nights I am reduced to tears because I’m weak, too frail, and I’ve failed again. With the morning comes the truth that You pick me up again and set my feet on the rock. Mercy is alive!

Hopeful Signs
February 14, 2011

From James:

On Saturday morning, So Young reported that she saw a “clear spot” in one of her eyes, a possible sign that the tumor is retreating. We promptly watched a movie at the theater that afternoon, while her brother Paul watched the girls. Yesterday, however, it returned to the way it was before. She compares it to “looking through fogged up glasses” all the time. Still, we expect the next few months to be a time of constant change with regard to her condition, as her body fights to regain ground.

Yesterday, So Young took her first run/walk outside since her vision loss became severe months ago. Actually, it was more of a “run/walk/trip,” as she says. I acted as her guide, a new role for me. Many times during races, we have seen blind runners — often young war veterans — running tethered to a sighted runner. They don’t generally hold hands, but that was our method. Before a curb, crack, or hole in the road, I would grab her hand and say “3-2-1 crack!” or what have you. She could sometimes see the obstacles and sometimes not. Once she told me that she could see most of the cracks. I stopped calling them out, and she promptly tripped. She didn’t hit the ground, and that was her only stumble in three miles.

We ran at twilight. I could see OK, but things are darker to her eyes.

“Most people wouldn’t run if they knew how dark it is for me,” she said. “But I’m stubborn. Full of pride.”

I told her that’s not pride. That’s perseverance.

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.”

What a Treasure
February 8, 2011

From So Young:

“No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” — Romans 8:37-39

In the quiet of my kitchen, in the stillness of this place, I prayed for an extra measure of joy and peace today. Suddenly I felt God’s presence filling any empty spaces, and tears fell.

Honestly, your generosity, kindness, and love had me shell-shocked. I remembered this morning and realized how, in big and small ways, my Jesus is meeting my/our needs. In unexpected ways, your love and goodness are transforming me and compelling me each day to put one foot in front of the other in victory.

Thank you dear God for loving us extravagantly. What a treasure you are!

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 >>

Radiation Ends
February 2, 2011

From James:

Today was So Young’s last day of radiation treatment!

We spent Monday through Wednesday in Baltimore on a “retreat” of sorts that we planned early on, anticipating that So Young would be more tired than ever as the treatment concluded. Ending radiation is a huge milestone for us. It means so many things.

Ending radiation means that we have ended the major treatment phase of So Young’s illness. God willing, she will never undergo surgery, chemotherapy, or any other treatment for this illness. If she does, it will mean that the tumor has become fast-growing (i.e., “malignant,” although anything growing in the brain — slow or fast — is malignant), which is something we are earnestly praying it will not do. So this is it. This was the one shot we had to fight the tumor medically, although of course we still believe that God is the physician who can heal it no matter what is done medically. So Young was treated with the maximum dose of radiation (5,400 cGy) for the brain. It is highly unlikely that they would treat her with radiation again, and then only as a last resort. 

Ending radiation also means that our life gets to return to “normal” to some extent, or at least we are hoping so, although we all need to adjust to So Young’s visual impairment, should it continue. The good news is that her eyesight seems to be improving.

Finally, ending radiation means that we have a new perspective on God’s love for us, because we have seen many people standing up for us during this time. If anything, I consider it to be a wonderful argument (albeit on a small scale) against those who would condemn Christianity for the crimes committed in its name throughout history. All of the people who drove us were not related to us by blood, but related to us through Christ. They were acting out of compassion because of their beliefs — because of Christ living in them in a real, supernatural way. They are just as much our family as our parents and siblings.

So what is next? We are meeting with the radiation oncologist (Kristen Redmond) again in six weeks or so for a follow-up MRI and appointment. She said that So Young’s tumor is likely to look bad at that time — “angry” is the word that she used. The swelling caused by the radiation is likely to make it look big and fast growing, which won’t be true. It will take some time for things to subside (six months is the conventional wisdom), and then we will see whether it has become smaller. That is the hope, although most often that is not the case. Still, the very gradual restoration of So Young’s eyesight is a hopeful sign.

After that, we watch and wait. At first, an MRI is performed every three months. After perhaps five years, the MRIs become an annual event. For Grade 2 astrocytomas, we are generally talking years of watching and waiting, hoping that things don’t turn for the worse. This kind of monitoring is not unique to brain tumor patients. Cancer survivors of all kinds endure it with painful regularity.

Today was a very emotional day for us. The last three days, frankly, have been wonderful for us, realizing that this major leg of the race has come to a close.

At Hopkins, every cancer patient gets to bang a gong that they have in the facility when radiation treatment is over. Everybody applauds when you do it. There are cheers and hugs and good wishes from everybody. So Young asked how many times she could hit it. Usually the patients hit it once. The nurse said, “As many times as you want!” So Young must have hit it a dozen times.