Wednesday, June 8, 2016

Early Call

With a 1:30 am wake up call, I'm in bed and it's just past seven. It was easy to head to bed since I can't eat much anyway because of scan restrictions. No dairy, legumes, animal proteins, nuts, seeds, soy products - I can't even remember all the restrictions so I focused on what I could eat, which is fruit and veg. I'm not hungry though, just physically exhausted. I can barely keep my eyes open because last night's sleep was terrible - wide awake until 3:00 am.

I had been fine for the last few weeks, my mental state has been a solid 8-10, but last night it hit me. It was inescapable. We have a scan in the morning that will show, with more than a 80% accuracy between necrosis, and recurrence or scar tissue. It's a brilliant tool to have, but one that leaves little doubt, and really no denial either. At first, I thought this could go two ways. Tumor or no tumor. Then I started reminding myself that I won't die of this tumor tomorrow, or next week, or even, heaven forbid this year. We're playing the long game. It's exhausting, but as you get to know the strategies, and learn from others, there are hundreds of thousands, maybe millions of different combinations of treatments. I'm certainly not at the end of my rope, even though, sometimes it feels that way. 

I don't really want to do the scan because I don't want to have brain cancer, but since I do, I might as well get some answers. I have no expectations; I have no premonitions. I have hopes that this blob has a maxSUV of under 3.0 (which to my understanding will not be considered recurrence), but there are factors out of our control, variables that I can't even pinpoint. 

So here I lay in bed, hoping for a quiet power. I hope for strength to get me through the days ahead. I will allow myself to laugh and have fun, even though on the inside I might feel like crying. If needed, I will permit myself that indulgence too. I hope for my friends that they are safe, and in this exact moment, are smiling. 

Results will be Monday, I will try to post them as soon as I am able. Thank you for the continued love, it's much appreciated, but above that it's needed too. Sometimes I can literally feel the hum of people's energy, and who knows maybe I'm just crazy, but I think it's real. 

18 comments:

  1. My thoughts and my love will be with you Jessica!! In these moments and always!!
    Much Love, Maleka

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  2. Our thoughts and prayers to you all. Bless you sweet Jessica, Dan & your family.
    I have not had a brain tumor but my husband is a survivor of a rare tumor on his brain stem. Even though I can't understand being in your shoes I know what it is like to be in the shoes of the ones who love you with all their hearts. We would take this from you and on ourselves in a heartbeat. Bless you finding the joys too in this hard hard journey.
    Big hugs and love to you all

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  3. I'm praying for a <3.0 too.

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  4. One thing that pulled my Sweetie and I through the hard times and the not knowing and the waiting for the other shoe to drop:

    https://www.youtube.com/watch?v=zaGUr6wzyT8

    We can't always foresee, or change courses, or control what runs through our heads, but we were almost always able to bring the calm listening to this song. Over and over and over and over...

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    Replies
    1. Impossible to not dance to that! Thank you :-). Xoxo

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  5. Mmmmmmmmmwah!!! Do whatever you need to get you through, and that's enough. I'm digitally giving you a mama hug and kiss on the cheek with words of, "its going to be ok..." Love you!

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  6. Thinking of you and wishing you the most peaceful and powerful experience over the next few days.
    All the best wishes,
    K.D.

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  7. Sending you calmness, confidence, courage, safety, friendship. C.

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  8. My thoughts favor the healing that is possible for you, and for all of us! xoxoxo

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  9. My thoughts favor the healing that is possible for you, and for all of us! xoxoxo

    ReplyDelete

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