Monday, July 1, 2013

Leukemia - Maintenance Week 16 - The Big Wave

Jemma continues to do well. She currently takes 10 mg of PuriNetol every day, 5 mg of Methotrexate on Wednesdays and Kepinol (antibiotics) on Saturday and Sunday. This light dose of chemotherapy is keeping her immune system functioning at a low level. On Wednesdays her appetite is normal, but the rest of the week it is ravenous. For breakfast today she ate two bowls of steel cut oats with peaches and a bowl of bow tie pasta and vegetables. It's wonderful to see her eating and gaining weight each week.

The strawberry patch is very close to the hospital so it's easy to stop by after getting blood checked.

Strawberry Picking

I've had a better week but am still struggling. Last week one of my readers diagnosed me with Post Traumatic Stress Disorder (PTSD) and several people have related personal experiences which have helped.

Tonight I finished reading the book The Big Wave by Pearl S Buck to the kids. It's about a tsunami which strikes a fishing village in Japan. Before reading the book I figured it would be about how the tsunami wrecked the village and the people pulled together to persevere, but it was not. Instead the book focused on the emotional states of mind a young boy goes through after loosing his entire family to the tsunami.

After the wave strikes, he is adopted as a son by a friend's family. The father is very wise and takes time to explain the behaviors he expects the young boy to go through while he grieves. First he will sleep all the time. Then he will cry all the time. We will feed him and the food will help to heal his body. Then he will cry but not as often....... only at night. In time he will be ready to live again.

Oh my goodness. This is what I'm going through and my behavior and emotions are predictable!

Needless to say, I have related to this book. Right now for me thinking about the future is very difficult. By the future I mean tomorrow, next week and next month. This includes any act that requires a commitment such as meeting friends for the afternoon.

Actually this is not new. Throughout this crisis I have been very reluctant to commit to anything and I think it has to do with not being ready to live again yet. I haven't wanted to bring older children anywhere. Anything beyond the weekly scheduled activities is way too much. Being stuck in the middle of a long term illness is difficult emotionally because everything is on hold throughout the entire duration of the illness. Now I don't know if the illness is over. It's on hold. I would like to think this is the end of the illness, but I can't be sure.

Last year I missed the birthdays of my two oldest children completely and this year I'm responsible for their parties. I know it sounds strange, but planning a party is a commitment and I can't get excited for it. What if I don't make it there?

Now the doctors have told me we can live again and we are beginning to. We are definitely doing it with actions, but I think my body is way ahead of my mind. Reading this book has helped convince me that the current problem is with me and not with Jemma. I have been reminding myself constantly that things are going well today, so enjoy it.


  1. Thank you for sharing your heart.
    Dana @ Project Day

  2. Simply take one step at a time and don't place pressure on yourself over your feelings. We sometimes feel so bad over the bad feelings that we are having (as though we shouldn't be having them) that the anxiety gets so bad and we end up being more anxious over being anxious than the original anxiety ... gosh that sounded confusing, sorry ... lol. :)

    1. I understand what you're saying. Don't worry, because worrying about worrying is even worse. You're right.

  3. {hugs} You are going through the hardest thing anyone can go through. You will emerge stronger for it, but meanwhile it is just hard. We are all here for you.

  4. I've written and rewritten a comment for you on this and the last post, but words fail me. Yet over the seas I want to offer you comfort and understanding.
    Please know I'm thinking of you and your family.

  5. Hugs and encouragement to you and your family. Take each day, each moment, at a time.


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