A note to our caregivers

2 Responses

  1. Darla Vizina says:

    Hi Jim!! Sorry its been a while since I’ve commented….things have been busy here….
    Just want to say thank u for this post…..it really hit home 🙂
    This disease definitely affects everyone who loves the person who has it!! Its been a struggle and I’ve broken quite a few times….as much as I tried to hold it together for him, sometimes it just comes out…..and he has been very supportive no matter how sick he was at the time. I remember one night…the first time I really broke down….he had just been diagnosed and we were in the hospital for a couple weeks….we were watching a movie together and I guess we just got lost in it, we were laughing and really in to the movie……then it ended and reality hit!!! We weren’t at home in our own bed…..this is the worst, when reality hits you. I got up and threw myself on his bed and hugged him and cried my eyes out!!! And he just held me and let me break……I so needed that.
    There’s has been a few more times, but mostly I am proud at how strong I’ve been….I’ve always doubted my strength when thinking about how I would react to something like this.
    He is in remission now…going to doc tomorrow and he will be scheduled once a month for blood work instead of twice a week so that’s def a step forward!! Even though he ISBN remission and the docs say he has a good chance of never hearing from that s.o.b. Leuk again….the fear of his return will never be gone…..and I will never forget what he’s put us through.
    Jim, thank you so much for your blog!!! I wish I would’ve found it sooner! One if the hardest parts of this journey was not having anyone to talk to that has been through it…..even though you have different types of leukemia, it doesn’t matter.. Donavon always tries to explain to me how sometimes he feels invaded, almost not human…I know that sounds weird but I think what he means is that people start to see you as Leuk, or even maybe like he couldn’t stop Leuk if he wanted…like he had no choice…whatever Leuk decided to do couldn’t be changed. And I think the lack of control he had over it made (and still makes) him feel helpless in his own outcome.
    Anyway, thanks for letting me blab all over your post 😉
    I am praying for you during this journey, Jim. Stay positive….Leuk hates it!! 😉

    • Jim says:

      Hi Darla. You win the prize for the largest comment ever on this blog! I loved it. Feel free to write as much as you like. I’m sure your comments are a big help to others who read this blog.

      You mentioned movies. They are a huge relief to me as well. It seems that when I am watching a really good movie I can get lost in a different world and escape from this one, if only for a couple hours. I’m a movie-holic and don’t plan on ever kicking the habit.

      I’m so glad your husband is in remission. Good news is always welcome when Leuk’s around.

      I know exactly what Donovan means when he says he feels invaded and not human. By ‘not human’ I’m guessing he means he no longer feels normal. It’s like he lost who he was and how his friends and family see him. I’ve experienced this too.

      The best way I know of helping your friends to see you as a real person and not a leukemia victim is to take control of the relationship. By that I mean, they often feel uncomfortable and don’t know how to approach you. So approach them. Let them know it is okay to talk about the leukemia, or they don’t have to at all – either way is fine with you. Then move them to the regular subjects you had before the leukemia. They will soon discover you are still in there – that the change is to your health, but you are still you.

      Anyway, I think I have just written the longest reply in this blog, so we both win the prize!

      Take care you two.

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