Archive for December, 2012

What Christmas Was Like This Year
December 26, 2012

From James:

I think my grandma said it best in her Christmas card to us this year: bittersweet.

First, the sweet part. So Young was able to go downstairs to unwrap presents with the girls and me, which would have been impossible a few days ago without the chair lift.

The presents were exceptional this year, but not because of their material extravagance per se. A few examples…

Laurie worked with So Young for weeks to put together a set of presents from So Young to each of the girls. Each girl received a letter from So Young, along with a picture of with their mom, and encouraging verses, all packaged beautifully in a jar for each girl. Somehow Laurie was able to meet with So Young and piece together the letters in a way that clearly captured their mothers’ heart for each of them, including words of praise, advice, and verses as they navigate the rest of their lives. These letters are so incredibly poignant and meaningful that I immediately cried upon reading each one. Our doctor had recommended something similar in the form of a video message from So Young that the girls could look at later, but that has simply become impossible given So Young’s condition, with her cognitive function and verbal ability greatly diminished.

So Young’s longtime friend Kim created something of similarly exceptional meaning. A few weeks ago, again when So Young was more capable and lucid, Kim interviewed So Young about each girl, and then had the girls create a piece of art depicting the qualities that So Young described. She also took photos of the mothers and daughters together, and then she packaged all of this and presented it to the girls this Christmas, each receiving an individually framed piece with the portraiture and message from So Young about each daughter, drawn in each girl’s own hand. The creativity and Herculean effort that went into this amazes me.

Kim, Laurie, Jin, and others also conspired to give me gifts “from” So Young to me, from the girls to their parents, to each of the girls, and sometimes mysteriously “from Santa” to one or all of us. Describing it here is cursory and doesn’t do justice to it.

The girls also received the vast majority of their gifts from the “Maryland Ladies Small Group” at our church, with Melissa leading the conspiracy. She and her crew simply took the girls lists and got them everything to the extreme, to the point that all three girls agreed that this was the “best Christmas ever” (“from the perspective of presents,” Shannon clarified). The piles of gifts that awaited them on Christmas morning were bigger than ever before, and evidently completely on target from the girls’ perspective.

Our Christmas dinner was provided in its entirety by Caroline’s small group, including a whole turkey with all of the sides you could want. My only duty upon receiving them was to provide my services as a Microwave Operator (and occasional Oven Operator) by heating it up.

These are just a few examples among many this Christmas. A monumental amount of creativity and hard work went into each of these endeavors. It is hard to express the gratitude I feel for my family being the recipient of all of these gifts, material and otherwise. I am reminded that So Young is deeply loved and poured herself into the lives of many. I am also struck by the generous love of Christ’s followers, full of a sincere and genuine compassion that takes believers to extremes of expressing love in tangible ways. I would challenge anyone to write this off as ordinary, run-of-the-mill humanistic duty. It is over the top. Motivated by what? Nothing ordinary.

We also enjoyed the company of close friends and family around Christmas. There was a pervading sense of sadness and loss, but also a gratitude that So Young is still here.

Now for the bitter part, although I don’t know that that’s a good word for it. The sad part is a better way to say it, perhaps. So Young was only dimly aware of Christmas this year. In the days leading up to the holiday, despite numerous reminders from me and others, she speculated that Christmas was a “celebration” called “King’s Dominion.” Later she said it was “Pilgrim’s Day,” even as she sat in her bed looking at the Christmas trees in front of her. She eventually understood that Christmas was coming, but that morning, she kept forgetting, over and over, from the time I got her dressed to the moment I brought her downstairs. Who is here? Where are we going? Why are we going downstairs? I would reassure her and explain each time that it was Christmas and we are opening presents with the kids.

This is just one example of the loss of short-term memory that I am observing in So Young, which didn’t exist or wasn’t noticeable a week ago. She will forget events within a few hours of them happening, such as denying that she went to church on the same Sunday she attended for half the day or that she saw Shannon and Lindsay perform a skit at the service. She will forget events from the day before, such as the gift I gave her for Christmas, which had the upside of me being able to show her the gift over and over again and her being pleased with it each time.

The girls and I had a somber Christmas Eve after our friends and family left. Shannon was particularly sad, she who had been my greatest encourager earlier that day when I was down. She rightly observed that we hadn’t done any of our traditions this year, such as advent. We also hadn’t done the Christmas movie marathon we’d planned. But I think more than anything, she like all of us was missing So Young. What we have lost of her is present with us all the time, something that we feel but can’t articulate and maybe aren’t even fully aware of. Something just feels wrong. We always miss her. Lindsay started a round of Christmas carols to cheer us up that night. Watching a Charlie Brown Christmas special helped us through as well.

Mommy was there Christmas morning, but it wasn’t the same. There was never a sense that she was fully there. She was physically there, just not the old So Young, the old Mommy. It is hard for me writing this to even describe to you who that person was. What was she like before? On Christmas, she was tired and very quiet, but we did manage to make her smile and chuckle a few times.

Everything in me hates what is happening right now. There are so many levels of despising it, and I know so few people fully understand it. Still, I am heartened by Christ’s suffering and how much He lost, even at the start, beginning as one of us, living as one of us, agonizing in loss as one of us, dying as one of us. I can’t shake my fist at God and say He doesn’t understand, because I know he does. I just wish there was another way.

Downstairs Again!
December 17, 2012

From James:

What is wrong with this picture?

So Young Downstairs

If you guessed, “So Young would never wear a Santa hat unless James tricked her into it,” you are correct!

What is right about this picture, on the other hand, is that So Young is wearing the hat downstairs, something that she hasn’t been able to do without extreme difficulty until today.

We finally got the stair chair — or more properly “stair lift” — installed today. This eliminates a mountain that stood between So Young and the rest of the world as her mobility has declined. We would often consider going someplace only to have the trip fail the “worth it” test, such as, “Is it worth it to climb down the stairs and (later) back up just to go out for a cup of coffee?”

This is definitely good news for us, brought to you by my grandfather, who lovingly paid for the very expensive piece of equipment, and my dad, who lovingly did all of the legwork to select it and have it installed. Tom of O’Neill Stairlifts is the guy who dutifully did a great job and planning for, ordering, and installing it. Some of you won’t need his services for a couple more decades, but when you do…

Here are a couple more pictures of the stair lift and So Young descending it for the first time today. She was downstairs for about an hour before falling asleep while eating dinner.

This is the sleek-looking track. It looks a lot like the brochure, which also featured sexy old people.

Stair Lift Track

This is So Young on the chair lift.

So Young on Lift

Another great thing that happened recently was So Young’s old small group coming to carol at our house on Saturday. They also brought presents and food. This is what I mean by living out Christ’s words, “I was in prison, and you visited me.” Being sick can be like a prison. You are literally confined to one place against your will, albeit not as punishment. So her small group came to us rather than us coming to them. They didn’t even demand that So Young be carried downstairs. They sang in our room. We could have carried her down, I suppose, but them coming to us was so much more like what Christ does. To me they sounded like angels.

So Young's Small Group Caroling

On the “how is So Young doing” front, things are not good at all. This is the worst I have seen her in the past two years. In the last blog post, I mentioned that her speaking was worse and that she was disoriented more often. She is more so now, I daresay much more so. I have written about her occasional anomia — getting words wrong or not being able to remember words. Now this is frequent, but it is combined with a general inability to reason and disorientation about current circumstances. There are many examples of this, some humorous but all part of a negative trend.

For example, on Friday Jin was pouring her heart out to So Young, talking in sadness about deep things, since they are like sisters. So Young seemed like she wanted to say something, so Jin asked her what she had to say. So Young said, “Is there any chocolate?”

Yesterday I told her she is getting a chair lift, which we have been talking about for a couple of months. Knowing her mental state, I asked her if she knows what a chair lift is. She said no. I asked her if she could guess. She said, “I think it’s a game people play.”

Today she asked me when the men wearing orange are bringing the fishes. Later she asked when someone is “bringing the puppies up.”

Will Shannon have to go skydiving?

Somebody asked her today where she is going to go when she gets the chair lift. She said, “Europe.” (I’ll grant you that that might have been an actual joke.)

Those are selected examples, but they happen pretty much every time you talk to her, and it is getting worse rather than better.

She is also incredibly difficult to understand when she talks.

Meanwhile, her extreme tiredness has not gotten better. She is on a strong dose of steroids that would normally make her wide awake and amped up, like a lot of caffeine. She was hyper like that two years ago when she was on the same dose of steroids. Not so now.

I am observing a trend where she continues to be too tired to eat full meals. She isn’t in danger of malnutrition, but it is happening. This is new.

She is choking more. Difficulty swallowing is a well-known side effect of brain tumors, and she is experiencing it with increasing frequency. I’ll switch foods for her, trying to find something less choke-inducing, only to find her choking on it as well. I don’t think that she is at the point that she needs a liquid-only diet or something, but this is happening as well.

With all of this happening, I felt strongly convicted on Friday that I should take time off as I had planned, no longer working from home. This enables me to focus on So Young and spend time with her. My current plan is two weeks, although I could see this being longer or shorter.

I’m not saying I have given up on So Young or that I don’t believe that God can heal her, because I do. I am telling you what is happening. It is a dark time. Am I going to pretend it is something else?

I have started reading scripture aloud to So Young in the morning, especially the Psalms. So much of it resonates now that seemed obscure before, about rescue, God’s love and power, and gratitude in spite of everything.

Third Cycle of Chemo Complete
December 13, 2012

From James:

Short Version: The third cycle of chemo is complete. So Young slept huge amount over the past few days and is still sleepy. Her speech and disorientation seem worse recently. We continue to be the recipients of much care and support from family and friends.

Long Version:

So Young took her final dose of the third cycle of chemo (Temodar) Tuesday night. This cycle was different from the previous cycles, because she was much more tired this time than all previous times, even though each cycle was characterized by tiredness as the foremost symptom. Since Friday night, So Young has only woken up for meals, essentially, and then in a couple of cases, she has skipped meals because she has been too tired to eat (Saturday night, Tuesday afternoon, and Wednesday night), something that is unheard of for her. That’s not to say that she has no appetite. Quite the opposite, actually, most likely because she is on a high dose of a steroid that is a strong appetite stimulant.

So Young’s ability to speak is deteriorating. A couple of weeks ago, I would have to ask “What?” for maybe every few things she said. Now, she is usually hard to understand when she speaks, and she speaks very softly. She also seems disoriented more often. She doesn’t understand simple things I tell her, seems confused by them. That’s not the case all the time, but it’s not a rare occurrence either. She also talks less in general, and it seems to take her a while to think up what she is going to say.

Emotionally, she has gone from being even-keeled or detached to being sad (last week) to being sad and irritated (this week), at least with me. The irritation could be attributable to the steroids and increasing frustration with her symptoms. She is especially concerned that I feed her properly. On Tuesday night I was explaining that we tried to feed her three meals, but she wouldn’t accept lunch because she was too tired. She slowly muttered, almost raising her voice, “I thought I told you to make me all three: breakfast, lunch, and breakfast,” counting with her fingers. I remember how irascible she was two years ago when she was on a similar dose of steroids.

Dr. Holdhoff said that we should continue with the higher dose of steroids for a few more days to see if it improves her symptoms as the chemo tiredness wears off. He said that we may schedule a follow-up MRI in a month. I’m really not big into the MRI-watching thing anymore, because I don’t think that our objective is the same as it was in the beginning and have become skeptical about the effectiveness of the chemo to “cure” the disease.

I think Shannon summarized best how I’m feeling these days, and I know this is how many of So Young’s family and friends are feeling as well. She asked me, “Dad, should I have hope, or should I be letting go of Mom?”

In the midst of all of this, we have been the recipients of many blessings these past weeks and days. For example, Shannon conspired to decorate the house for Christmas on Tuesday night, while So Me watched So Young and I was away grocery shopping. She also involved my brother-in-law Jeremy and our dear friend Laurie. I was delighted to see the tree up and the entire house decorated, all in about an hour’s time while I was gone.

IMG955352 (1)

Sandy took the girls shopping for Christmas on Saturday to buy presents for their friends and family, since it is so hard for me to leave the house with them. Sandy’s thoughtfulness and generosity in doing this amazes me. Also, the “stair chair” should be installed this coming Monday. This is huge, because it enables So Young to conquer the “mountain” that the stairs leading to the top level have become. We’re so grateful to my grandfather for buying this for us. Today I thanked him over the phone, and he expressed to me his sincere love for So Young, whom he saw this summer in Galveston for a few days.

I have been working from home for a couple of weeks. The type of work I do, combined with the generosity of my superiors, enables me to do so, and I’m grateful for that as well.

It’s hard to really list everything people have done. I describe “big” examples above, but there are so many that occur with less fanfare, like people remembering to pray, people bringing meals, and friends visiting faithfully every week.

The other day, our friend Sandy and her daughter came to visit from Kenya, where Sandy and her husband are missionaries. They actually didn’t come just to visit us, but in a way they did, because they went out of their way to come to our home to see So Young while on a short stay in Virginia. There was a moment during the visit that was among the most poignant I have seen in my life. Sandy’s mother-in-law is sick with cancer. At a certain point, So Young muttered something about the mother-in-law, and I asked her to repeat it. She said she was going to pray for her. Then she began muttering something else that I couldn’t understand. I asked her what she was saying. Frustrated, So Young glared and me and said, “I’m praying!” We didn’t know she was doing it, but here was this sick lady who could barely talk praying for another sick woman on the other side of the country. At the end of the prayer, there was a long pause as if she was trying to find more words, and then simply, “In Jesus name.” In Jesus name indeed, So Young. Amen.

Worse Symptoms, Possible Progression
December 7, 2012

From James:

Just when I think I have nothing to report, I end up with something to report.

Some of So Young’s symptoms started getting worse last week after the surgery (I don’t want to say which ones for privacy reasons), so I mentioned this to Dr. Holdhoff, and he prescribed a new medication to decrease spinal fluid pressure. He said her increased symptoms either indicate that the tumor has spread further down her spine or that there is pressure. I started her on the medication this Monday, and it hasn’t seemed to help much. Around the same time, she started to seem much more drowsy, going from maybe 16 hours of sleep per day to 20, I would say. She also became incoherent more often, and her speech was worse. I assumed all of this was due to the new drug making her tired. All of these symptoms continue to persist.

I told Dr. Holdhoff, and he said that the new drug does not cause fatigue. It is more likely tumor progression. We are going to increase the dose of steroids this week to see if it helps. Symptoms can increase because of an increase in the swelling of brain tissue caused by tumor progression. Steroids can reduce the swelling. If the steroids do not help, we would go back down to the previous dose.

Meanwhile, we start the third cycle of chemo tonight. I used to have a more sanguine perspective about the chemo, but that is wearing off, because Dr. Holdhoff said more directly a few days ago that her tumor actually became “slightly worse if anything” after the last two cycles, which he hadn’t stated directly before. (Or maybe he implied it but I didn’t get it. I’m not one for subtlety.) I believe the thinking now is that we are trying it as long as she tolerates it, but that it doesn’t seem to be doing a whole lot.

You may have noticed that the blog posts have taken a darker turn recently because of So Young’s deteriorating condition. I don’t read them to So Young anymore, although I do read the comments people leave, omitting anything that might imply something dire. I guess I’m saying that to let you know that the way I’m doing things has changed. I’m not going to sugarcoat a bad situation and I’m protecting So Young, although I don’t want you to think I am without any kind of hope.

We really appreciate your prayers and everything you are doing for us. You are living out Matthew 25:34b-36 in many ways, which says:

“Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.”

This Week’s (Mis)Adventures
December 1, 2012

From James:

Short Version: So Young had chest pains on Tuesday that the medical professionals determined were probably inconsequential. On Thursday, however, she had a true cardiac irregularity (after her surgery) that gave us pause.

Long Version:

You may recall from my November 19 post that So Young was to have a “filter” installed to prevent further blood clots. A series of events took place this week surrounding the surgery.

On Tuesday, I took her to the lab to get some bloodwork in preparation for the surgery, which was scheduled for Thursday. Drawing blood was of course uneventful, but after they drew her blood, So Young said, “My heart hurts!” and was placing her hand in the middle of her upper chest. We later found out that she was also experiencing shortness of breath.

I went to the back and asked the phlebotomist if that was normal and if I should be concerned since she just drew blood and So Young has a history of blood clots. She said she didn’t think so but we should ask our doctor, so since I was going to drop off some paperwork at the doctor’s office anyway, I drove So Young there and asked for a last-minute appointment. They were able to squeeze us in to see a nurse. She checked So Young’s heart and breathing and said everything sounded fine. She also performed an EKG, which turned out normal. As a precaution, the doctor ordered a chest x-ray, since So Young had had the pulmonary embolism, and it turned out normal as well. We were relieved that there was no problem and thought nothing more of it.

On Thursday, the surgery at Johns Hopkins to install the filter took place successfully. It is actually called an inferior vena cava (IVC) filter and is an umbrella-shaped device (or so I’m told) that is installed either through the neck or the groin to an area near the belly and blocks blood clots from traveling to the heart and lungs. So Young needs this device because she can’t take blood thinners anymore since there is a small hemorrhage in her brain tumor, but she has a history of blood clots, which can be fatal. The surgery took maybe an hour or an hour and a half.

I went to sit with her in the recovery area, and after a short time the nurse began taking a keen interest in the heart monitor, saying that So Young had “gone afib,” meaning (I later found out) that she had developed an abnormally high and irregular heart rate coupled with very low blood pressure (also referred to as atrial fibrillation). So Young’s heart rate is usually around 60 bpm, but it was up to around 170 bpm. Afib can cause strokes or heart attacks. She didn’t feel chest pain or shortness of breath while it was happening, as a person normally would.

I told the medical professionals about what had happened on Tuesday, and they became concerned that she had become afib on that day as well but that the EKG simply didn’t pick it up afterwards because it had resolved itself by then. They decided to keep her overnight to observe her heart for additional afib events.

So we spent the remainder of Thursday waiting, waiting, waiting to be placed in a room overnight. Thankfully, we got one in the old maternity ward that was quite large and had a chair that converted into a “bed” for me to sleep in.

The night’s observation revealed no additional irregularities. Her heart rate gradually went down to its normal levels. We were eventually released, arriving home at maybe 7 p.m. Friday evening.

There’s no real follow-up needed for the afib event other than possibly So Young’s general practitioner ordering an echocardiogram on her heart to determine if it is shaped normally. The doctors said that, should she have another event like this, we will need to call 911.

Throughout this incident, I was thinking about the list of functions of the brain stem, where the tumor is infiltrating most recently. Regulation of the heartbeat is among its functions. It is impossible, of course, to tell whether the tumor caused the afib or whether it was something else, such as anxiety from the procedure (although she seemed completely calm while the event was happening). It just causes me to be all the more alert for symptoms indicative of a heart issue.