Monday, April 18, 2016

Everything has changed.

I'm writing because writing gives me a space, a space where I have a moment to reflect.  I sit here, four wires attached to the backpack attached to me.  My neck is starting to get sore because I don't want to have to shift these wires around.  Just stay here, pack of electronic cables.  I want to ignore, just for a time, what this means.

Oh, Optune. What does it mean to have this all the time?
What does it mean for who I am?

Sad.  I'm so sad.
I was able to be encouraging with Maybelle.  She's so curious about these changes, and she kept talking about my hair being gone.  She ultimately accepted it, although I woke her up as I was getting out of her bed.  She kissed me and went back to sleep.

31 comments:

  1. Sending love and strength and support, Alison.

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  2. Try not to worry about Maybelle. When I went through chemo and lost my hair, my then-13 year old daughter with DS had the easiest adjustment of all my kids to my changes... my fatigue, my mask when counts were low, and my hair loss in particular. She used to ask me if I "still have no hair" and ask to rub my head "for luck." When it started growing back, she loved checking out the hair growth and touching the "fuzz." When we (rarely went out in public when I was wearing a mask, she would tell -- almost brag to -- other people that I was wearing a mask because I had cancer and didn't want to get sick... so beautifully simple. Take care of you.

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    1. I'm so happy to have your daughter was comfortable with the changes. So far Maybelle is fascinating, but not angry or afraid. A big cling, but that makes sense.

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  3. Thanks for sharing with us — your friends, loyal readers, devoted fans — how you’re doing. And thanks for not sugarcoating it. It is sad. Whatever Maybelle understands, your experience and knowledge grants you a different, deeper sense of what’s happening now and of what the future may hold. And… that’s sad. If I want to look for the silver lining (and I always do, however futile an endeavor this might be), I’d say that perhaps it’s helpful that her understanding has limitations. Perhaps.

    I don’t like what is happening to you. I don’t like not being able to do anything about it. So I send you these well-intentioned, stumbling sentences — expressing sympathy, seeking that elusive glimmer of hope. And this link to Ron Sexsmith’s cover of “Pennies from Heaven,” a song that mingles cheer and melancholy.

    https://www.youtube.com/watch?v=_GngTpAtvHg

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    1. I appreciate going with the sadness I'm feeling A little bit of hope is good, too. I'll watch the video after I've gotten Maybelle for school (see--I can get Maybelle to school! I can do it, I think!)

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    2. Allison, I don't know what to say to cheer you, but I don't want to leave a blank space either. I'm thinking of you and Maybelle and Brian, and with selfishness I love reading your blog.

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  4. Love you. Stay strong, girl!

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  5. 💗 💗 ❤️ 💓💗💗❤️💓💗💗💗❤️

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  6. The engineer in me wants to know all about the backpack and skullcap. Have you become an electric Jew?
    The other parts of me want to give you a hug and share a cry.

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    1. Thanks, Dimitri. We can talk about the electric stuff pumping into my head!

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  7. That pack looks heavy. What a burden to bear in addition to everything else. My prayers are with you. And you're right, it is sad.

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  8. You sweet thing...you have such caring friends, a lovely daughter, and a way with words...in addition to wires and a backpack.

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    1. You should add a picture of me into East Village Inky. Or just send me a picture I can hang on my wall.

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  9. I'm so sorry, Alison. I wish I could carry that pack for you. We love you out here -- we really do.

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    1. I do hear and feel the love from you, Elizabeth. Thank you! xoxox, always.

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  10. Jennifer CullimoreApril 19, 2016 at 11:14 AM

    I'm sorry Alison! Big hugs! <3

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  11. Isn't that a Super Hero backpack? So much power working on your behalf. It must be mind boggling. With love from afar.

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    1. I do love being a super hero. And yes, bogging--a new world.

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  12. Care and thoughts of warmth, touch and love.

    Stephen D.

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  13. Alison, I send lots of hugs and prayers your way. I'm so happy that you have Kelly as a mom and support system. She is the best!

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  14. Alison, I send lots of hugs and prayers your way. I'm so happy that you have Kelly as a mom and support system. She is the best!

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