Third Cycle of Chemo Complete

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.


19 Responses

  1. Amen, sweet Ruby.

  2. Your children, so beautiful inside and out are blessings to you, SoYoung and James! Keep hanging onto positive thinkings… We are praying continuously,consistantly.

    Love you all!
    Grace and Grant

    • Thank you! We know you are praying. Also, thanks so much for your generous gift. You are so kind to us.

  3. This is why so many of us love So Young! Herself seriously sick and barely able to think coherently or speak a sentence, she struggles to mutter a prayer for someone else! It is the epitome of her big heart and who she is. It is why we so love her and selfishly miss her and want her back in our lives the way she was. It is gut-wrenching and beautiful. Thank you for sharing that with us, James.

    • Yeah, that amazes me. If I am ever sick like she is (and I suppose most of us will be some day), I hope I have that kind of heart.

      • I have no doubt about that. You’ve shown your equally big heart in your own way. We all see it–in how you love and care for So Young and your three beautiful daughters and the grace you’ve shown in this journey. In some ways, seeing a loved one suffer is just as painful. (Her grace under the circumstances is inspirational, isn’t it? She does continue to amaze us. At her weakest, she is most powerful.)

  4. That kind of generosity of spirit is rare. She is a wonderful woman.

  5. Your daughters are beautiful, you’re a great man. I am mourning with you all and hoping with you too. My thoughts, prayers go out to you every day.

    • Thanks, Mike. Mourning and hoping summarizes it perfectly. Thank you for your prayers.

  6. James,
    Please know that my family continues to keep you, So Young and the girls in Prayer (And I believe in the power of Prayer). I told Shannon at the honor roll breakfast not to hesitate to call me if you guys are in need of anything, so I’m letting you know as well…I’m right around the corner.

    ~Kentra Mills and Family

    • Kentra,

      It’s great to hear from you! Thanks for praying. We too believe in the power of prayer. Even now, it seems that So Young does, too. Thank you for your offer to help! Some day I may take you up on it!

  7. I’m sorry if my words are not right, James. For some reason, I just want to say ‘Beautiful’ in the face of what has been happening. It is in how you and everyone touched by this journey have behaved, reacted, and loved. It is not universal, but the story shows that it is clearly possible. I continue to pray for So Young, you, the girls, and the extended family there by your side.

    • Thank you, Uncle Tom! There is beauty in it, especially as I look back on So Young’s life and think about who she is and how many she has touched in just 40 years. And then to think that she continues to bless people even as she is about as sick as a person can be… Thank you for your prayers and encouragement!

  8. Amen indeed. AMEN.

  9. Your daughters look beautiful in that photo!

    Our small group is/has been praying for you. Thank you for being so open in sharing with us – please let us know if we can help!

    • Thank you! You guys are great. We are grateful for how you have blessed us and continue to through your prayers.

  10. Please let So Young know that she CONTINUES to humble and inspire me and I’m sure all of us. Thanks for sharing and know that you all are constantly in prayer.

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