Four Months After Treatment

From James:

So Young’s radiation treatment ended about four months ago, on February 2. It’s hard to believe that it has been almost 7 months since the original diagnosis on November 12, 2010. I have good news to report!

So Young’s appetite has returned to normal. Before, foods tasted strange to her, and she often didn’t feel like eating. These are common side effects of radiation treatment. Now she is able to eat three meals a day.

The severe fatigue she once experienced has diminished as well but has not gone away completely. Feeling very tired is also a side effect of radiation, one that we would expect to improve 3-6 months after treatment is complete. She still feels tired more than I would characterize as normal, but she is able to get a full night of sleep and stay awake for most of the day without feeling exhausted. I write this, however, even as she has had another bout of severe tiredness this morning, so I wouldn’t say that she is over this issue.

The fact that these symptoms have improved shows that most likely the loss of appetite and fatigue were symptoms of radiation itself rather than the brain tumor directly, medication, or one of the myriad other possible causes. Still, each week and even each day varies, so I’m monitoring the situation closely at all times for changes.

So Young’s hair is most decidedly growing back. There was a time early on when we thought (wrongly) the hair loss was going to be permanent. We later learned that it is most often temporary, so compared to our original misimpression, this is great news. She basically lost her hair all the way around her head and in a spot right above her forehead. It is all growing back now with dark, fine baby hair that we assume will become more like normal hair later on.

So Young’s vision is unchanged. She had a very bad day last week when she felt like she was going blind, but it has stabilized again. She said everything was turning completely white on that day. Her eyesight varies day-to-day. There is no clear reason why. She describes it as “static” or a “haze.” She has trouble recognizing faces. She reads things on the Internet using her iPad, which she finds useful for zooming into text. Zooming in doesn’t make things clear. It just increases the size of the blurry objects she is looking at.

I had a checkup with our optometrist this week, and based on a recommendation from our good friend Lucia, asked if there was a way to correct So Young’s vision. We had assumed that there wasn’t, because no doctor had mentioned it so far and her eyes and optic nerve are in perfect condition. The problem is that her brain can’t process what it is receiving from her eyes. Still, it never occurred to us to ask, so I did, and they said that they can’t make things clear, but there is a lot of technology available to magnify objects near and far, such as telescopic eyewear. I am bringing So Young in during early July to investigate further. The doctor said it is a matter of trial and error. So Young has a great sense of humor about it and jokes about how she is going to look big, thick glasses that magnify her eyes to 10x their size.

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10 Responses

  1. So glad that you have all that good news to report! Congratulations guys!

    • Charlotte,

      Thank you! Overall, she is returning back to the “old So Young.” (Get it?) The other day the forced me to let her drive a few feet in the parking lot. There is no slowing her down, it seems.

      James

  2. So thrilled to read the good news. Each day is bring new blessings. We continue to pray for healing and strength for all of you!

    • Thank you for your prayers, Kitti! Great to hear from you on the blog. — James

  3. I am very glad to hear the good news! I knew it’s been awhile since we chatted James, but I wanted to let you know we are all thinking about So Young and your family down at HST. Hope you don’t mind, I took the liberty of adding you to my blogroll, so I hope you all get some readers from it.

    All the best!
    Kyle

    • Hey Kyle! Great to hear from you. It is good to hear you are following the blog and that others at HST are, too. Absolutely, add me to your blogroll. Hope to see you around at the State Department! It’s a small world, so I’m sure I will. — James

  4. So glad to hear all the good news as well. As an aside, my dear father-in-law went nearly blind later in life. He too had an indominable spirit like So Young and it was the very same John Hopkins that equipped him with what was then new technology to help him see better and at that time he was about 75. He was so grateful as once he got use to it, he was able to watch some of his favorite TV shows again. Technology can be an amazing gift. Looking forward to seeing you all in the near future :o)

    • Debby,

      That’s an encouraging story for sure. We’ll see what they come up with, dorky looking or not! 😉

      I think she would really appreciate it for movies and TV. Initially, I was thinking they would have some technology for blind people at movie theaters, where a narrator describes the movie for you, but we haven’t found that yet. Only headsets for the hearing impaired, it would seem. But a device that magnifies would surely be useful. For now, she is big fan of IMAX 3D in the second or third row!

      We’re looking forward to seeing you soon, too!

      James

  5. I rejoice at So Young’s rapid regaining her “normal” life. She looks very good. I am happy to hear about the technology that will enable her to resume her normal activities. I would hate giving up reading. I’ve never heard even one complaint from So Young.

    • Mom,

      It is indeed good to see her progress. She was a big-time reader like you, and still does it, but slowly now. It does make you appreciate the simple things and hope for still more improvement. Yes, isn’t it amazing how she complains so little? I don’t think I would be as patient.

      Love,

      James

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