Archive for December, 2010

Born for Adversity
December 30, 2010

“A friend loves at all times, and a brother [or sister] is born for adversity” (Proverbs 17:17).

From James:

Yesterday, our dear friends Helen (who brought a meal for us Tuesday) and Erica (who did the photo shoot for us) drove So Young to Johns Hopkins. They left at around 8:15 a.m., and I believe they returned sometime after 3 p.m. — no small sacrifice of time, considering that they used a vacation day away from work in the process, but sisters like them are “born for adversity,” as the proverb says.

 

Helen and Erica

Helen’s sister, Sungjin, is driving So Young today. She had to find arrangements to watch her kids, and I know she has other things going on, so it isn’t easy, but Sungjin has always been there for So Young. Again, a many hour journey. She’s glad to do it for her friend.

So Young’s vision is alternately worse and better. Yesterday it was particularly bad, although on Tuesday she said she could see clouds in the sky (which is poetic) and the Mormon Temple (which may not be saying too much, considering its size and shiny-ness). On Tuesday, she also wrote her first text message to me in a while: “i luv u xoxo.” Not to get too personal, but the next one said, “y ib cae. goig 2 kubxh.” Yeah, I have no idea what that means, either.

So Did It Shrink?
December 27, 2010

We won’t know for 6 months.

“If we looked at an MRI right now, it would lie to us,” said our radiation oncologist, Dr. Redmond. Swelling would appear and seem to indicate tumor growth, but it is too early to tell. We will take an MRI in a month. For now, they take CT scans daily to make sure everything is lined up properly for the treatments. The effects of radiation are cumulative and won’t be known completely until perhaps 6 months from now.

Meanwhile, there have been changes in So Young’s vision. I feel that she sees better, but she isn’t so sure. She seems to read more things that she couldn’t read before. She also notices a few details. She says that she can tell there is a blurry spot in the middle of her eye, with the periphery less effected. The other day, she had an episode where her vision went dark intermittently, like a pulse — on, off, on, off — which was frightening. She is also more sensitive to light these days.

So Young is adjusting to her impairment. She cooked French toast on Christmas morning and fried mandoo (Korean dumplings) this evening.(She needs a helper to cook.)  She ran/walked 2 miles on the treadmill a couple of days ago.

She is exhausted and her emotions are frayed. She cried and slept a lot on the car ride home. She wonders if the radiation didn’t stimulate the emotional part of her brain, but then she considers herself an emotional person anyway. Sometimes, she feels that God has forsaken her. But then she remembers that Christ suffered just as we did. “He is despised and rejected of men; a man of sorrows, and acquainted with grief: and we hid as it were our faces from him; he was despised, and we esteemed him not” (Isiaiah 53:3).

Merry Christmas!
December 25, 2010

Merry Christmas to you and yours! Most years, we send a card to family and friends, but this year, we (well, James) didn’t for various reasons, so this is a virtual card to everyone we love.

Christmas 2010

We are so blessed by all of you!

James, So Young, Shannon, Lindsay, and Audrey

Knocked Down, But Not Destroyed
December 23, 2010

From So Young:

Today marks the first week of radiation therapy. I am physically sapped of energy emotionally, but still spiritually strong. Something you may not know about me is that, when presented with a challenge, I will arise to meet it.  The week has been long and hard, but my God is timeless, the One who created everything out of nothing and brought order into chaos, because He said, “Let  there be…” At the same time, when you call upon his name, He always shows up, and he shows up on time, and not only for me, but for everyone who is watching and praying for what He is going to do in this situation.

Two More Rounds
December 23, 2010

From James:

Since I last posted, So Young has undergone two additional rounds of radiation, bringing the total treatments to three. The last treatment of the week will take place this evening. I took her on Monday and Tuesday, and Dad took her for the first time last night. He will drive her again tonight, while Mom continues to watch the kids and help So Young at home. I will likely drive every Monday from now on, because we will meet with the radiation oncologist on those days.

Yesterday, I wrote a six-page guide for getting to and around Johns Hopkins for the radiation appointments, since there are some complexities to the visit, including parking, checking in, finding the hidden waiting room, and administering medications. Dad and I are refining it. It should be useful to anyone who drives.

So Young has experienced no side effects from the treatment yet, although sometimes she feels more tired just afterward. Significant tiredness is supposed to hit in a couple of weeks, along with hair loss. Those are sort of the “guaranteed” side effects. Others are possible.

We learned something interesting about the burning smell that occurs while So Young is undergoing radiation. The technician said that it is not an actual smell. Rather, the part of the brain responsible for smell is being triggered and is “manufacturing” a smell that is not there. So Young said she could smell it even while plugging her nose. 

Instead of sleeping all day and night like she used to, So Young’s days and nights are reversed right now, but we are turning things around. The psych nurse (Laura) got her a prescription for a low-dose and non-addictive medication to help her sleep at night, and we are starting to practice better “sleep hygiene,” like waking up at the same time every day and only allowing one-hour naps. It’s difficult because of the number of things making her alternately too tired and too awake right now — medications, the tumor, being depressed and anxious about having a tumor, etc. 

So Young and I continue to be amazed at the support we are receiving from friends, neighbors, and coworkers. We don’t have to be told we are not alone in this, because we know that we aren’t alone.

Speaking of alone-ness, did you know that radiation waiting rooms are mini-support groups? The waiting room near So Young’s machine is tiny. Patients end up at the same appointment times for many days in a row. They get to know each other. Many are going through the same things, even the same type of cancer or a tumor in the same location. So they talk and share experiences. Like any traumatic experience, cancer can make people amazingly vulnerable and open.

As someone not suffering from a life-threatening disease or its treatment, I feel a great deal of compassion for these people, some of them very young, but really of all ethnicities, incomes, and backgrounds. The broken human condition is no respecter of persons. There are so many needs out there — not just for the body, but for the soul and spirit. I sense that many of the needs of these people are not met, despite the best attempts of places like Johns Hopkins to meet them, and many people do indeed feel alone.

“Bring It!”
December 20, 2010

From James:

Radiation began today. We left the house at roughly 2 p.m. (to run a couple of errands, granted), hit 95 by 2:30 p.m., and when it all was done, arrived home shortly after 9 p.m. It’s worth it, however, because this is probably going to be So Young’s only treatment. It has to be done by the best, because it’s her life and she deserves the best.

The radiation treatment itself lasted 20 minutes, but we did a lot of waiting. And we will continue to wait, as we are waiting for the radiation to do its work, and we are waiting, whether or not radiation “works,” for God to do his work. There are a lot of faith-filled people praying for us, so we figure He is bound to listen. Meanwhile, we wait. Call it The Waiting Room, in which we all find ourselves at one time or another in life.

Speaking of which, here is a picture of us sitting in the waiting room at JH. So Young said she wanted it to be a “bring it” picture, like she’s saying, “Bring it on!” I don’t know that it quite conveys that idea, but FYI, that’s what she’s thinking in the picture.

So Young said she didn’t feel anything during the treatment. It just smells bad, like something burning, and it makes “radiation beam noises,” and they tell you not to move, so of course you feel like moving and are afraid you are, but you can’t because your head is bolted to the table. We left very positive and upbeat, hoping that just some small change in the tumor’s size might restore her vision.

On a side note, the Tumor Board met again about our case, which makes us feel kind of important, because a bunch of well-educated adults are sitting there paying attention to us and caring for us behind our backs, making important decisions/recommendations. They agreed, once again, not to operate, saying that it is too large, too risky, and we need to give radiation a chance. This is actually encouraging news, because I continue to second-guess whether we should have operated right away, given the size.

People at Ambassador Bible Church continue to pray for us, and some are also fasting. We love you guys! You are the best family we could have ever asked for.

My Point of View
December 19, 2010

From So Young (dictated to James):

These days are full of emotional ups and downs, but also full of unshakable faith and strength.  I credit it to God and to all of you who are lifting me up in prayer. I could never express my gratitude for what you are doing for us. I have to trust that God will bless you for all you are doing, because there is no way I will every be able to repay you. If  I were to write down every nice thing people are doing for me, your jaws would drop to the ground. If everyone were as kind as you are being to me, the world would be a better place. I am unable to respond to every comment on this site or e-mail, because I am very slow in being able to do it. But I will do my best to call those I have been meaning to call. I really appreciate and love you.

One thing I don’t feel in this situation is alone, and I don’t feel unloved.

When I think of the people who are praying for me, I want you to know that I pray for you, too.

This is my POV:

“Yes, and I will continue to rejoice, for I know that through your prayers and God’s provision of the Spirit of Jesus Christ what has happened to me will turn out for my deliverance. I eagerly expect and hope that I will in no way be ashamed, but will have sufficient courage so that now as always Christ will be exalted in my body, whether by life or by death. For to me, to live is Christ and to die is gain. If I am to go on living in the body, this will mean fruitful labor for me. Yet what shall I choose? I do not know! I am torn between the two: I desire to depart and be with Christ, which is better by far; but it is more necessary for you that I remain in the body. Convinced of this, I know that I will remain, and I will continue with all of you for your progress and joy in the faith, so that through my being with you again your boasting in Christ Jesus will abound on account of me” (Phillipians 1:18-26).

Thanks to all! Much love to you. Thanks for reading.

So Young

Ready… Get Set… Beam On!
December 17, 2010

Beam On!

From James:

At Johns Hopkins, they give today the portentous-sounding name “Day One”: the first day (sort of) of radiation treatment. It is a day that the radiation technicians use to calibrate things and make sure everything is lined up properly so that, when radiation starts, they can zap the tumor to the greatest effect. So Young got to wear her new mask, which is made of white, meshed plastic material, fits tightly on her chin and head, and bolts to the table, so that her head stays in the same place every time they apply radiation. They also did a CT scan, and I think the doctor poked her head in for a minute. Not into the mask or the machines, you know, but metaphorically speaking.

The room is a bit cold but has a pretty nice ambiance, actually. There are these lighted tiles above the (cold, metal) table with flowery images on them, and pleasant music is playing in the background. You can bring your own CDs for your treatment, but they aren’t equipped for MP3 players. Ah, the sacrifices we must make. Here is a kind of eerie, space-age looking picture of So Young about to be placed under some sort of apparatus, with the mask on.

We also met with a “psych” nurse today to discuss the psychological effects that the tumor and medication are having on So Young. Frankly, losing your eyesight and having a potentially terminal health problem are kind of depressing, and when they give you medications known to cause depression, well…

Johns Hopkins is great, because the nurse is really advocating for So Young and consulted with us free of charge. It is truly a “team approach” at this hospital, and they make earnest attempts to address every facet of this illness and its treatment.

For the first week, all of our treatments will start at 5:30 p.m., which is not our first time choice, obviously. I will be driving her Monday and Tuesday, and Dad will be driving her Wednesday and Thursday. We are in for a lot of driving. The average trip, including driving there, the appointment, and driving home, will take about 6 hours or so — possibly more on some days, and rarely less. So let’s see, I’m an English major, but according to my calculations, that’s 5.5 weeks, 5 days per week, and 6 hours per day… We’re talking 165 hours of radiation-related activities, roughly 110 hours of which will be driving.

Dr. Holdhoff Says to Hold Off
December 16, 2010

From James:

Short version: Dr. Holdhoff is recommending against chemotherapy; radiation “practice” starts tomorrow, with the real thing starting on Monday; and our house is full of light.

Long version: We met with our medical oncologist, Dr. Mathias Holdhoff (an impressive-sounding name), today. Medical oncologists specialize in using approaches like chemotherapy to treat cancer and tumors.

I was skeptical that the meeting would accomplish anything, since low grade tumors aren’t usually subject to chemotherapy, but this turned out to be one of the best consultations we have had. Dr. Holhoff spent a great deal of time asking questions about and discussing So Young’s case. He gave us a long-term view of what So Young’s treatment is going to be like. He also did an impromptu analysis of the growth of So Young’s tumor over the past few weeks and described many aspects of her MRIs in detail.

The main result from the visit is that So Young will not be undergoing chemotherapy in addition to radiation. Initially, we wanted to participate in a chemotherapy trial, but it would have caused delays. I still wanted to address the possibility of chemotherapy with Dr. Holdhoff, however, because of the “worrisome” dividing cell (that’s the pathologist’s word for it) found in the biopsy. If the small sample taken in the biopsy missed a large number of malignant cells, chemotherapy would be advisable.

Dr. Holdhoff reemphasized that the tumor really shows a lot of signs of being of the low grade variety: it didn’t “light up” on the MRI, it doesn’t appear to have grown much over the past three weeks, and the sample revealed a small number of dividing cells. If it truly is low grade and we treat it with chemotherapy now, the treatment may not reach that small number of cells effectively. Also should the tumor become malignant in the future (which is possible for low grade astrocytomas), the effectiveness of chemotherapy might be lessened by the resistance of the tumor cells to the chemotherapy.

I was very interested in his discussion of long-term treatment. After this initial round of radiation, the size of the tumor will be monitored regularly, starting very frequently and decreasing over time, but never getting below a couple of times a year for the rest of her life. If the tumor becomes malignant or continues growing, chemotherapy may be called for, and radiation will continue to be an option, as long as enough time has elapsed since the previous radiation treatment.

The doctor also showed us a side-by-side comparison of the November 12 and November 29 MRIs. The tumor really is large, and it is amazing that it hasn’t affected So Young more. Very rough measurements that Dr. Holdhoff performed on the spot showed no growth and perhaps some decrease in size.

Dr. Holdhoff was very patient and spent a long time with us, fielding our questions and describing everything clearly. The compassionate care he provided is typical of what we have experienced at Johns Hopkins. Today was an 8+ hour visit including the drive, but he made it worth it.

In other news, it turns out that Friday’s appointment is going to be a “dry run” rather than actual radiation therapy. They just need to bolt her head to the table (no joke) and aim the radiation beam at the correct spot, and bingo! Real, live radiation will start on Monday.

Today, the electrician finished the new lighting that Mom and Dad provided for us. The main level is unquestionably well-lit because of their generosity and the electrician’s hard work. The electrician (Wayne) of Marway Electric is very professional and skilled at what he does. So Young and I honestly don’t feel like our thanks can keep up with the generosity we have received from my parents for so long.

Her Eyes Are Perfectly Healthy
December 14, 2010

From James:

Short version: Events of yesterday and today have made the cause of So Young’s vision loss clearer, and she is gearing up for getting her brain zapped.

Long version: Yesterday afternoon, after a phone call from our neurosurgeon Dr. Lim, I scheduled an appointment with our optometrist check So Young for a condition called papilledema. Papilledema is the progressive loss of eyesight caused by intracranial pressure (ICP). If So Young was suffering from papilledema, Dr. Lim could install a shunt to ease the pressure and in turn restore her sight, but he would need to act quickly, because she could lose her vision completely if he did not. The downside of the shunt is that it would delay radiation by at least 10 days. So far, Dr. Lim has always insisted that ICP is not the cause of her vision loss, saying that it is instead caused by “the tumor encroaching on her visual pathway.”

Dr. J. (the optometrist) was pretty shocked when he performed his examination. So Young’s last appointment was on September 14, and her eyesight was 20/20 with correction at that time. Now she cannot read a very large letter from across the room or large letters close up, with or without correction. The vision loss has been quick and dramatic. The good news is that her optic nerve is healthy — just as healthy as it was 3 months ago — which means that she does not have papilledema. Everything about her eyes, going back to the thalamus, is healthy and normal.

This morning, we had another short-notice appointment, and with a particularly rare specialist at that: a neuro-ophthalmologist, who focuses on the neurological aspects of vision function. Dr. Hoffman also performed a thorough examination and determined that So Young basically has 4/200 vision (vs. 20/20), which means that she can see at 4 feet what a normal person can see at 200 feet (or something to that effect). This is a very rough measurement, because frankly everything is blurry to her all the time. In one interesting test, he determined that So Young can accurately identify colors when both eyes are used, but cannot when using only one eye. Also, she says she sometimes sees an object clearly for a split second, and then it lapses into blurriness.

Dr. Hoffman agreed with Dr. J. that the optic nerve is not the problem. He hypothesized that the tumor is somehow affecting the lateral geniculate nucleus (LGN), the part of the thalamus that relays visual information to and from the visual cortex. The function of the LGN is largely unknown. Dr. Hoffman said that he could not predict whether the tumor shrinking due to radiation would cause her vision to return. He said that tumors of this type are very rare, and nobody has the experience to guess the outcome of such a case. He has seen maybe two or three such patients in 30 years of practice.

Overall, I was encouraged, because I have been worried about the papilledema issue for a couple of weeks now, and although the doctors reassured me, I didn’t feel that it had been adequately considered. If I had known you could check for it at the optometrist, I would have done it a while ago. So Young, on the other hand, was discouraged that Dr. Hoffman did not say that the tumor shrinking would cause her vision to return.

As I wrote in a previous post, So Young’s radiation therapy is going to start this Friday, December 17. It will take place every weekday (except Christmas Eve and New Year’s Eve) for 5.5 weeks, so it will end in late January, perhaps January 27 or so. It’s hard to believe this, but we really haven’t treated the tumor at all yet. It is over a month after the diagnosis (November 12), and really we have only done diagnosis after diagnosis and planning so far.

So Young went wig shopping with her dear friend Kim today. We also won these terrific, gourmet cupcakes from Minnie Bliss Cupcakes thanks to Jenn and received a delicious dinner from Ashleigh’s small group. The electrician has started installing the new recessed lighting, and So Young is de-“lighted,” so to speak. The girls went to bed very peacefully, unlike last night, which was a bit of a fiasco.

Everybody is asleep, and I’m thinking I should have invited the neighbors over for dessert, because you think I’m skinny now but these great meals and desserts are putting an end to that quick…