Archive for January, 2011

How It Began: Part 2
January 29, 2011

From James:

This is the second in a series of posts describing the early events surrounding the discovery and diagnosis of So Young’s brain tumor.

We went for the MRI at a local imaging center in Woodbridge on Friday, November 12. So Young wore her Marine Corps Marathon shirt. They allowed me to sit in the room while the MRI was performed. I didn’t bring a book or anything, so I just sat there praying or sleeping, or closing my eyes and pretending to sleep or pray.

They admonished So Young to “keep completely still,” which of course always makes you all the more able to keep completely still.

I remember that as we walked out, the radiologist seemed to be scurrying around more than he was when we got there. They said we would get the results in four days, but then just as we left they said within 24 hours.

Right after the MRI, we went shopping for Shannon’s birthday party, which was scheduled for that night. I remember discussing how four days was a long time to wait for the results. Or did they say 24 hours? Which was it? But it was nothing, so it didn’t matter when they told us. Actually, a longer wait would mean nothing was wrong.

When we arrived home, there was a message on the answering machine.

“Hi, this is Dr. Jonathan Amy, trying to reach So Young Gage. We have the results of your MRI, and I need to discuss them with you.”

There was something surreal about that moment and everything that happened over the next few minutes. We were so afraid and only reacting moment by moment to what was happening to us.

I prayed out loud for So Young before we called, that God would help us no matter what the doctor said. I told So Young to sit down at the dining room table and that we would speak to the doctor together on speakerphone.

“I have the results of your MRI here, and I am afraid it is quite serious.” His voice was earnest yet clinically detached.

“I’m sorry, there is no other way to say it. The MRI revealed that you have a brain tumor. It is on your thalamus. It is a serious situation, and we need to act quickly.”

I remember looking at So Young and the terror in her eyes.

“Am I going to die?”

He told us that most likely it would have to be surgically removed and that only a few neurosurgeons in the area are qualified to do that on tumors in this part of the brain. He recommended Georgetown, UVA, or Johns Hopkins.

Within the hour, Dr. Amy had set up an appointment for us at Georgetown for the following Wednesday, which I promptly moved to Monday morning.

<< Part 1 | Part 3 >>

Advertisements

Scrambling to Get SY to JH
January 27, 2011

We stayed in Baltimore last night, and looking at the snow outside our hotel window, it is a good thing we did.

Getting So Young here yesterday was no small feat. School was canceled, so Laurie and Ann couldn’t drive. Dad would have driven, but he had an important meeting to attend. I had to go to work. Mom had to watch the kids.

I was just about ready to take a last-minute day off when Ellen called to save the day. She and Michael rushed to our house and got So Young to her appointment on time. They also took So Young to the hotel afterward, when I made a change of plans and left work early for Baltimore to beat the oncoming storm. Ellen reserved the room with her credit card since my online reservation didn’t go through. I later switched the reservation to my card, but how many people would stick their necks out like that?

All of that is to say that a lot of people sacrificed (or were willing to sacrifice) a lot for us on a day of overlapping crises. Once again, “thank you” seems inadequate.

Holding Me Up
January 25, 2011

From So Young:

Seven days of radiation treatment left! I’m really starting to feel the exhaustion set in. Over the last month or so it manifests itself as pity parties, at least a half a dozen, where it’s just me late at night weeping and asking God, “But why? Why me? Why this?”

And then I hear his quiet, still voice, always gentle and kind, “My grace is sufficient for you, for my power is made perfect in weakness.” As I have said and will say again, “God is good!” In these moments, Jesus takes me by the hand and lifts me up to stand on him, the rock, my firm foundation, my everlasting hope. These despairing moments don’t last long as I remember each and every one of you. Your prayers and thoughts are holding me up! My sadness turns to rejoicing as I see your love. Thank you, loved ones, for walking alongside us and making this grueling race so worth every step!

Grace, peace, and love,

So Young

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 >>

At Just the Right Time
January 17, 2011

From James:

You could think of everything that people have done for us as individual instances of compassion, but we are convinced it is God working.

On Friday night (January 14), Ashleigh, Joy, and Elizabeth (three single ladies at our church) hosted a sleepover for our girls at Ashleigh’s apartment. When Ashleigh initially asked me about the possibility, I was a bit nervous about bringing it up to the girls. Would they be afraid to spend the night away from home? Not a chance. When I asked Audrey and Lindsay, they were beside themselves, jumping up and down and screaming with delight.

We could barely fit the girls’ innumerable items of luggage into Ashleigh’s car when she and Joy came by to pick them up. Like any other sleepover for girls of their ages, this one involved very little sleep. They watched movies, ate junk food, made “glow in the dark” T-shirts, made a music video, etc. The three hostesses soon realized that they weren’t entirely prepared for the sleep deprivation about which my girls were so enthusiastic. Word has it that Audrey (the youngest) was the greatest sleep depriver of them all. The last shall be first, and the first last.

So Young and I spent Friday night in Reston, our old stomping grounds where we met and courted. I decided to do so at the last minute, wanting to take advantage of the moment to make it special for So Young.

Our dear friend at church, who we only met days ago, has been a great blessing to us. She has showered So Young with gifts, advice, help, and care, all based on her experience in similar circumstances, which makes what she has done all the more special to So Young.

Laurie is watching all three girls every Sunday night for three hours so that So Young and I can get practical things done, go on a date, or just relax and do nothing. This is so “Laurie” of her to do — something immediately useful and exactly what we need. She is our neighbor of over ten years, and I have to tell you that before any of this happened, I was thinking what a blessing it is to know them, not aware then of how much of a blessing it really is.

So many are fasting and praying for us, even people we hardly know.

My coworkers just finished two weeks of meals for us. One single guy at work, in his twenties, made his family’s favorite meal for us. It really shocked me that he could do this, frankly, but more so it spoke volumes about his character.

On Sunday, I told an old friend of mine that this has been the worst of times for our family, but also the best because of the love we have received from so many caring people. So Young says that it is like Christ’s love for us. We didn’t ask that He lay down his life, but he did it at just the right time — when we needed it most.

Q&A
January 13, 2011

From James:

How did Shannon’s sleepover go last Friday (January 7)?

It was an exercise in extreme middle schooler decadence. In case you aren’t familiar with extreme middle schooler decadence, it involves the excessive consumption of sugar and caffeine, excessive inhalation of helium from balloons (which I thought I was buying because they were pretty), excessive watching of “chick flicks,” extreme sleep deprivation, and extreme messiness. For some reason, this time they left out extreme noisy-ness, which is normally included. Thankfully, the decadence was contained in the basement.

When I surveyed the aftermath, I discovered that the floor was literally carpeted with candy wrappers. They even slept on candy wrappers. I found a drink that consisted of punch sprinkled with popcorn and laced with Hershey Rolos.

How is So Young doing?

She has lost a lot of hair because of the radiation and feels bloated because of the medication. (Steroids cause a lot of water retention.) Besides the tiredness, those are the two side effects that are bothering her the most right now. The hair loss was traumatic. So Young couldn’t see that she was losing hair, until one night she noticed significant bald spots on both sides of her head. Nevertheless, her hair covers them nicely at the moment.

Her vision is terrible. She has very bad light sensitivity (meaning normal lighting feels very bright to her), which is why you might see her with sunglasses indoors. Flourescent light is particularly bothersome. In terms of her actual eyesight, she can’t tell if her vision is getting worse, but she knows that it is very bad.

The good news is that So Young is adjusting to her disability. On Sunday, she made breakfast, lunch, and dinner for the family, with some assistance. She also made chicken soup for Dad, because he has been very sick for a while. She is on an organizing binge. She thinks she is doing this because it enables her to be more in control of things. It also helps her better know where things are around the house.

How is everything else going?

Great! Some of the biggest blessings include the people who have signed up to drive So Young, the dinners we are receiving (still coming since mid-November), and my mom’s constant care and help.

People have signed up to drive So Young every day until her treatment is complete. All slots are filled. I hoped that our friends and church family would help out, but I had no idea they would do so to this extent. Some people have even taken vacation time from work to drive, and everybody has adjusted their personal lives significantly to help out. What an incredible demonstration of God’s love.

What I have mentioned on the blog is just part of it. Some day I want to write a blog entry listing all of the things people have done for us. It will be a long blog entry.

How are you doing? Are you taking care of yourself?

Of course. (Cough, cough.) No, but seriously, I feel a lot better, and yes, I know, I need to get a different doctor. I’m actually meeting with him today.

Praise the Father, Praise the Son
January 11, 2011

From So Young and James:

So Young asked that I post the lyrics to “Praise the Father, Praise the Son,” a song written by Chris Tomlin. She couldn’t sleep on Saturday night (not because of the middle school slumber party downstairs, mind you, but because of ongoing sleep problems), and this song gave her a lot of peace, so she typed out the lyrics. She said that she always found the song beautiful, but the lyrics hadn’t meant as much to her until now. As she finished typing, it started to snow.

O sovereign God, O matchless  king
The saints adore, the angels  sing
And fall before the throne the throne of grace
To You belongs the highest praise.

These sufferings, this passing tide
Under your wings I will abide
And every enemy shall flee
You are my hope in victory!

Praise the Father, praise the Son,
Praise the Spirit, three in one.
Clothed in power and in grace,
The name above all other names.

To the valley for my soul
Thy great descent has made me whole.
Your Word my heart has welcomed home
Now peace like water overflows.

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.

We Registered!
January 4, 2011

From James:

So Young and I have signed up for the Marine Corps Historic Half (MCHH), which will take place on May 15. So Young has run every MCHH since the inaugural race four years ago. I have never run one of them. It is 13.1 miles. The longest distance I have ever run was roughly 12 miles, and I was limping for days afterward. For that reason, I am hoping that we run/walk, but especially walk.

So Young is excited to run it. Being inactive is very much against who So Young is as a person. The tumor, the medication, and the radiation have forced her to reduce her physical activity since mid-November. She has run a few times on the treadmill so far, most recently 2 miles this morning. I have to tell you, if I get a cold or feel a mysterious ache, I stop running, but you can’t stop her. She is one tough lady.

Training starts on February 21. A big part of the purpose of this race is for So Young to focus on something farther out in the future, beyond today and beyond radiation treatment. We don’t know if it will be possible for her to run the race, because we don’t know how she will react to radiation as it progresses or what will happen with the tumor. The side effects of radiation last for months and even years, and you become more tired as time progresses. Nevertheless, it takes the focus off today and says that months out, she is going to once again accomplish something amazing.

Meanwhile, for the next two weeks, my workplace is bringing dinner for us. Laura provided dinner on Sunday, and Steve tonight. These gestures are not nearly the whole extent of my coworkers’ generosity and care for us, and we are truly grateful.

Great Expectations for 2011
January 2, 2011

From So Young:

Hello 2011!

I have great expectations from my mighty God this year. I think God has given me a bigger faith and allowed me to grow through this experience. He has brought me through a faith journey to understand him better. He is taking me on this journey to better understand him and his heart for all believers and the lost.

I want to live all of 2011 not looking too far ahead but being thankful for everybody God has put in my life and the small things of daily life. Even though it is going to be hard, God is going to give our family the ability to do that. I don’t know what he has in store: if he is going to restore my sight and shrink this tumor so that I can do what every mom should be able to do for her kids. I have to walk by faith and not by sight — literally.

You hear all the time how the Spirit resides in people, but when you actually see his people moved to compassion — not just for other people but for you and your family — it is overwhelming. In the beginning, I said, “God is good, all the me.” I still believe that. If I wasn’t a believer when this all started, I would be now, because this kind of  love is amazing. If everyone could treat each other the way we’ve been treated, this world would be so much better for the hurting, the lonely, the unloved, the rejected, and the ashamed.

I don’t know why God has decided to pour out his blessing and protection on my family and me, but I am very strengthened and thankful. That’s how I want to choose to live 2011 — waking up thanking God because he worthy of all my thanks and praises and glorifying him any way I can, because his name is above all names. Some day, every tongue will confess that Jesus is Lord. It is by that name that people are fasting and praying for me. It is his name and faith in him that is going to take this immoveable mountain and move it.

“[Jesus] replied, ‘Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, “Move from here to there” and it will move. Nothing will be impossible for you'” (Matthew 17:20).

I’m going to live my life expecting great things because God is great. I believe that I will  able to tell this tumor to shrink, and it will. We are all looking expectantly at him — that he will do it if he wants to. God wants us to confess to him that we believe. Well, I do believe.

I just want to live each day for God and have a good attitude and a right heart. My resolution is to get back to doing the normal things I used to do. I want to continue running and sign up for the Marine Corps Historic Half. (If any of you want to sign up, that’s the one I’m signing up for.)

I feel such gratitude for all the people who have come out and done so much for our family, especially fasting and praying. I do feel the power of your prayers. If we were to list all the kind things people have been doing — our church, neighbors, friends, family, coworkers, etc. — you would be astounded to hear it.

Thank you and we love you! Happy New Year!