Steroids, Headaches, and the Purpose of It All

From James:

Today may be So Young’s last day on steroids. She has been taking some pretty high doses over the past few months to reduce the swelling in her brain caused by the radiation and the tumor itself. She weaned off to the point that today she took only half a pill (1 mg). Tomorrow she will take none, unless the doctor orders otherwise.

Yesterday, we attempted to run a long run together (5 miles) while Mom took the kids shopping for spring clothes. So Young said her head was hurting beforehand, and then as she started to run, with each step her head hurt, so we called it off for her safety. She said she had similar headaches prior to radiation, which really means that she had them prior to being on steroids, so this could mean that she will resume steroids after I call Johns Hopkins tomorrow, although perhaps such headaches are not a problem. I’m not sure.

She has had two very bad episodes of headaches twice so far: once on the morning before she met with her neurologist (pre-diagnosis) and once on the afternoon before the biopsy was performed. They were quite severe — debilitating, I would say — and caused by intracranial pressure (ICP), which is pressure in the skull caused by the presence of the brain tumor as it blocks the normal flow of fluid. She was essentially crying in pain and vomiting as a result of these. We’re keeping a watchful eye to ensure that these don’t happen again. If they do, I believe they will eventually recommend a shunt to enable the normal flow of fluid and relieve the pressure, which is quite common. It is also possible that they will recommend that she up her dose of steroids again, at least in the short term. So Young hates the steroids because they cause her to gain weight, but if that is what they recommend, there is nothing we can do about it.

Her eyesight remains essentially the same. As usual, I still contend that it is getting better, and she adamantly insists that she is just coping better. For example, she read the fortune from a fortune cookie the other day. That’s progress, right? She said they are so hackneyed that she guesses at the words and gets them right. One day at church I asked her if she could see the words projected on the screen at the front of the church. “There are words up there?” was the response.

Meanwhile, we are adapting well to our new routine — me taking the kids to school in the morning, Mom picking them up in the evening, etc. Friends often visit So Young, although not every day, which is good. I work from home Wednesday afternoons, which So Young appreciates. We will continue to receive meals twice a week through March.

The hardest part right now for So Young is the emotional dimension of things. When she is alone, she sometimes feels lonely and sad. When she has a lot of visitors and is busy, she is easily exhausted. We are trying to achieve an elusive balance between the two extremes. (Please don’t read that as a plea to stop visiting! So Young really wants visitors. She’ll say “no” if she needs to rest.)

So Young asks why all of this is happening to her. She wonders if there is a God-ordained purpose to it. We always conclude that there is a purpose but that it may not be knowable yet.

Our pastors are preaching through the book of Romans, and So Young feels that the last two sermons in particular have been an answer to her prayers, in which she has asked God why this is happening. The first of two about suffering is already available on the ABC web site. The second should be available soon:


5 Responses

  1. Pain does make us look inward, and too much pain becoming a focus…. how to get away from it, what to do about it…. makes us insensitive to all else. Believers have Christ & each other though, to draw the sufferer back toward Life & the Author of Life. We learn from them that we are loved, how to rightly love ourselves, then & that we will not be abandoned.

    So Young, I can promise you this:
    1. we emerge from suffering “knowing” things we could not possibly have comprehended beforehand (Job)

    2. we are more humble, which is to say we know how to skip the frills, & just go for what is needful (various Psalms, try 27, 40,107)

    3. we become experienced & willing to comfort others. (2 Cor.1:2-7)

    4. and because we are very, very lucky, we become so joined company with our Lord & Comforter on this rocky road that leads to Kingdom Come, that we learned to seek His face with a whisper of praise, no matter what. (Phil. 4:4 -7)


  2. Dear So Young and James,
    Just to let you know that we are praying continuously for a miracle. We also pray for a good day today. Hang in there…
    Love, Grace

  3. My children,

    My heart wants to spare you this suffering. I want to come with a cure or to take your place. However, I trust in our Lord, who loves you more than I’m capable of loving, to care for you in such a way that your witness brings Him glory. He promises to never leave us or forsake us. He demonstrates His love for us daily. Great is His faithfulness. His love endures forever.

    Our family is so blessed with the multitude of people, God’s people, that pray for us and care for us. In addition, other people, who don’t know God, have reached out to help us. We are indeed very blessed.


  4. Ruby, hang in, when the going gets tough, the tough keep going. And everyone knows that marathon runners are a tough breed. Take care of yourself. You are in my thoughts.

  5. We love you, Rubes and James. It breaks my heart knowing that you’re going through the dark part of what I went through, too. The wondering why, the anger, the wanting to know the reasons. I wish I could give you the reason. We have to keep believing that there IS one–and it goes against every proud, selfish, human instinct I have to try to believe that there is one, despite the fact that I may NEVER get to know what it is. (Sometimes lately I’ve been thinking that maybe part of the reason I suffered is that so you would know, these years later, that you are not alone. At least, I hope so. If this gives it some reason, I’ll accept my suffering gladly. I’d rather take yours away.)

    We had a small subset of MCM runners in VA Beach this weekend. You’re always on our minds and in our prayers. We love you so very much. I can’t wait to see you at the historic half–because you’ll be there, running your heart out! I’ll be cheering from the sidelines until my PT clears me for running again. When that happens, I’ll run with you the race he has set before us.

    Happy spring, beautiful precious gem of ours! Know you are loved and held, always always.


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