I want to write a note to the spouses, partners, parents, siblings, and children who live with, care for, and love us.

It’s true we live with the possibility of death, but you are facing the possibility of loss. Some of us will beat Leuk and some won’t. Death is frightening but at least it has an ending. Losing the one you love is not so easily blotted out.

Some of my readers, like Darla (she sometimes makes comments on this blog), don’t have leukemia but are the loved ones of someone who does. It’s not quite correct to say they don’t have the disease because when Leuk is in the home he, in some ways, infects everyone in it.

Their white blood cells and bone marrow remain healthy, but their souls are fighting for sanity. Their hearts are beating for answers. They struggle to make sense of a senseless situation.

We carry the disease, but our loved ones carry us.

So I hope we would all say this to our lovers and family:

It is okay to tell me you are afraid. You might be holding back, stoically thinking you have to be strong for me. But, my love, I won’t break. I won’t get more sick if you cry in front of me. I know you are even more afraid than I am. You have a right to be afraid.

You are doing so much, giving so much, and I feel like I give so little back. Yes, I’m sick, but I am still in love. In love with you. I know how hard this is for you and I love you all the more for sticking with me.

But go and take some time off for yourself. Find moments away from the house. Unload your burdens to a friend. Breathe fresh air so you can come back to me all the stronger.

I know you pray for me. What you may not know is I am praying for you.

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2 thoughts on “A note to our caregivers

  1. 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!! 😉

    • 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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