Archive for October, 2012

Second Cycle of Chemo Underway
October 28, 2012

From James:

So Young started the second round of chemo on Friday night. This is a higher dose  at 350 mg vs. the previous 250 mg. So far, the main side effect is extreme fatigue. She practically didn’t leave her bed today and was at times incoherent when awake. She will take the chemo pills until Tuesday night. In about two weeks, I’ll drive her up to Baltimore again for an MRI and follow-up to determine what affect the treatment has had on the tumor.

From the outside, it is hard to tell if anything has been happening to the tumor, good or bad, since the first cycle started in late September. Her ability to walk has become worse. Her right arm is less usable. For most of the other impairments (sight, speaking, etc.), I can’t detect a change, although she seemed less tired for the last couple of days last week, before the chemo started.

So Young had her first session of physical therapy on Friday. Travis, the physical therapist, evaluated her ability to move her legs in various ways. She appears to have normal sensation in her legs. The problem is that her right leg is incredibly slow to respond to signals from her brain, and her right foot sort of drags along. Her right leg also gives out entirely (and suddenly) at times, which is the cause of a lot of her falling, even when someone is helping her along. We left the session with practical strategies for helping So Young sit up and “scoot back” in bed. She needs to do exercises while in bed to guard against blood clots, although the medication she is taking will be the best defense against that. Eventually, she may benefit from additional special equipment to compensate for her walking difficulties.

In past years, this would have been a big weekend for So Young, since today was the Marine Corps Marathon. She ran four MCMs and almost completed her fifth, but she had to stop at mile 20 during the fifth (right next to the Washington Monument) because she couldn’t see and just didn’t feel right. A couple of weeks later, she was diagnosed with the tumor. There is a great and clear irony that the woman who ran all those miles just two years ago spent today sleeping, and when she was awake, was barely able to walk.

But a marathon isn’t just about running 26.2 miles on one day. It’s just as much about everything you’ve done up to that point to get to that day: the short runs and the long runs, the times you felt great and the times you felt like you couldn’t take another step. We’ve got to believe that God has prepared us for this time up until now, as difficult as it is while we’re going through it, and that there is still a long road ahead of us.

Thanks everybody, for your prayers, friendship, and sustenance (literal and metaphorical) as we run this race together. Today we received a wonderful meal again, one of many we have received so far since the new diagnosis. We also got many much-needed groceries from a group of ladies in Maryland who have been amazing about helping us since this crisis began two years ago.

Here’s a picture of So Young (right front) with a group of her friends that took her out to lunch on Friday. Like so many others, these ladies have been a tremendous support for  her over the past weeks and years. Mom calls them the “hands and feet of Christ.”

Lunch with Friends

Lunch with Friends

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Difficult Times
October 19, 2012

From James:

Short Version: We discovered that So Young has a blood clot in her lung, which is treatable using a blood thinner. Meanwhile, her other symptoms continue to worsen. The kids miss their mom. We’re praying for the best.

Long Version:

Yesterday we discovered that So Young has a small blood clot in her lung, called a pulmonary embolism. She has had shortness of breath and wheezing over the past few weeks, especially when she eats. I told the doctor about it in passing, and he immediately called for a CT scan of her lungs. For reasons unknown, people with brain tumors tend to develop blood clots more frequently. So Young’s lack of mobility may also have contributed. We rushed to Johns Hopkins but did not have to be admitted. Instead, they injected her with a blood thinner called Lovenox.  I will be injecting So Young with two doses of the medication every day, indefinitely.

If there ever was a “down” point in this story so far, I would say that yesterday was it, combined with the progression of the impairments we are witnessing. If you haven’t seen her in over a month, you will be surprised when you see her again.

So Young’s symptoms have continued to worsen since she was diagnosed with the regrowth of the tumor on September 20 and even after her first round of chemo. It has been not quite a month since then. At that time, her new impairments were slight, but the notion of her even using a walker (as the doctor suggested) was laughable to us.

Her motor abilities on her right side have continued to decline. It isn’t safe for her to walk even short distances unassisted, and for longer distances, a wheelchair is required. Her right leg randomly gives out or drags as her brain misfires in trying to send the proper signals to it. It is hard to believe that this is the lady who was legendary for running 20 miles on a Sunday and then proceeding to paint the kitchen the same afternoon.

So Young’s right arm and hand are almost unusable now. She used to be able to write in any “font” she chose. Now she has given up even giving her signature with her right hand.

So Young can’t be alone at home now under any circumstances.  Going to the bathroom, getting dressed, bathing, putting on her contacts, etc. unassisted is extremely difficult for her right now. Thankfully, Mom is there full-time on weekdays and often on weekends, helping out with So Young and the kids over 12 hours per day on many days.

So Young’s speech is notably impaired. She speaks very quietly, and her speech is slurred, so it is difficult to understand what she is saying.

The sight in So Young’s right eye is almost as bad as it is in her left eye now. She frequently complains that she “can’t see.”

She falls frequently. I’m going to be scheduling physical and occupational therapy for her soon. The doctor said that they will help, whether her symptoms continue to get worse or get better.

Cognitively, I think that So Young is more affected now, especially in terms of remembering the names of people and things. For example, she didn’t know President Obama’s name when we watched the recent presidential debate, and she couldn’t remember the names of the vegetables on her plate the other day. She isn’t constantly disoriented or anything. She just seems confused at times. Many people have also observed that she talks a lot less than she used to.

Emotionally, So Young is impossible to read these days. I can’t tell if she is blocking it out or if this area is somehow impaired like so many other things.

The kids seemed unaffected by their mom’s condition a month ago, but today it is clear that they are greatly affected. I have had difficult, tearful conversations with each of them (the older ones especially) as they grapple with the changes So Young is going through and the uncertainty of the situation. I had to be honest with Shannon and Lindsay when they asked (point-blank) whether it is possible that Mommy will die. Yes, it is possible, but we don’t know and can’t know. We can only trust God, pray for the best, and take each day as it comes.

The other day, Shannon said that she misses her mom. They have all expressed a similar sentiment. I’m trying to make sure now that they are all able to spend more time with Mommy, even if it just means lying beside her on the bed or reading her a book.

None of this is to say that we have lost hope or don’t believe that So Young could get better. We simply don’t know. All we know is that we miss the old So Young and are praying that we’ll get her back soon.

Waiting to Be Made New
October 6, 2012

From James:

I looked at the calendar just now and can’t believe it has only been a few days since So Young finished the first round of chemo on Tuesday, October 2. Every day seems so long recently. The side effects So Young experienced the entire time were pretty much the same as I described in the previous post: extreme tiredness, feeling drugged, dizziness, etc. No hair loss. No nausea. There was a marked difference yesterday (three days after) from previous days in terms of the side effects being lessened, but I’m sure she’ll have good days and bad days. Now we wait until October 26 to begin the second cycle. We’ll meet with the oncologist the day before just to check So Young’s condition and make sure she is ready for the next round. The doc says her early bloodwork looks good.

So Young seems to be suffering less psychologically than she was before chemo started. I think it helps her to know that she is doing something about it. She is hard to read right now, which isn’t normally the case with her. We’re pretty close anyway, so I can generally gauge how she’s feeling. She has said that she’s tired of the great difficulty she has walking and her vision being even worse than before. I asked her a couple of days ago how she was doing psychologically. She seemed confused about what I was asking at first, but then she said, “I feel like I can’t wait to be made new again.”

I wish I could better articulate to you what it is like to be loved and cared for by so many people so clearly and tangibly during a situation like this. People have started bringing meals, which has made things a lot easier. It is my understanding that believers from all over the world are praying for So Young. My coworkers are rallying around us. Friends and family have come by to spend time with So Young from as far away as DC (bearing a baby), Newport News, and even Colorado. (Hi, Aunt Grace!) The visits elevate So Young’s spirits considerably. Mom and I have observed that she sleeps when we are around, but when others are around, she wakes up and brightens up. We’re not taking is personally!

We’re going to be getting things to help with So Young’s safety and mobility inside and out of the house: a wheelchair, a hospital bed, etc. These aren’t the kinds of things that a young woman is keen on having, but our perspective is that it’s for her good for now, until God makes her new, as we hold to the hope that He will do.

How Chemo Is Going
October 1, 2012

From James:

No barfing. Lots of sleeping. Feeling drugged. Dizziness when she walks. Good appetite. Possible mild insomnia early in the morning, but otherwise sleeping, sleeping, sleeping — almost 24 hours per day. (She was sleeping about that much prior to chemo anyway, most likely because of the tumor.)

That is how So Young is doing after about two and a half days of chemo. She’ll take a dose tonight and tomorrow night, and then she’ll be done with this cycle. She’ll take 23 days off, and then she will start the second cycle.

She says funny things and has lost track of time. Yesterday, she asked whether it was Saturday or Sunday, and when I told her it was Sunday, she said, “How was Saturday?”

She is in bed all day and is determined to leave the house once a day, which I am wary about. We tried it on Saturday. I walked her down the stairs, out the door, and to the car. We made it to the Panera Bread parking lot, but she decided not to go in. Yesterday, we actually made it into Starbucks and sat there for a while. It’s good for her psychologically to get out, I think, but I’m not entirely sure if it’s a good idea.

She has a great appetite and craves bagels and coffee a lot for some reason. Many people from church have signed up to bring meals through November, which is pretty amazing.

It’s hard to observe whether her tumor-related symptoms are changing in either direction (good or bad) right now. She is still very unsteady on her feet and weak and uncoordinated in her right arm, and she complains of greatly diminished vision. Her talking doesn’t sound right. I say all of that, but of course I don’t expect immediate results after a couple of days. I do hope for a stop to the progression of the tumor very soon.