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Tomorrow and Tomorrow

A week into proton therapy, we’ve settled into a routine.  It’s a much earlier routine than we’re used to, but we’re all adjusting.  Ordinarily I’d qualify that with “about as well as could be expected”, but I don’t know if that’s strictly true.  What does one expect?  And anyway, I think we’re just adjusting, period, no qualifiers.

It all starts a couple of hours before sunrise, when we administer a staggered series of three medications.  Or at least we did; now, for the most part, Rebecca administers them herself, once we’ve managed to wake her up enough.  The first medicine keeps the second from making her throw up, and the third keeps her brain from crashing.  Assuming it’s needed at all, that is; we don’t know, but can’t take her off it long enough to find out.

The mornings are devoted to proton therapy and recovering from the sedation, and then afternoons are a mixture of meetings with specialists and spending time in stores, parks, playgrounds, and so on.  Rebecca is as spunky and mischievous as ever, with only minor physical evidence of possible side effects.

And then, after dinner and some quiet time, we all go to bed.  Kat and I are slowly synchronizing to the new early-to-bed-early-to-rise schedule, which means that we’re a little less exhausted every day.  This is a bigger deal than you might imagine.

That’s the story so far, anyway.  People ask me how I’m doing, and my answer now is always the same: “One day at a time.”  We don’t know what tomorrow will be like, which has always been true, but now we’re very sharply aware of exactly what that means, which was not always true.  Tomorrow a proton beam might rob her of her ability to write, or to remember her last birthday, or to run in a straight line.  Tomorrow might bring a drug reaction that causes a badly itchy rash, or trigger blind-panic anxiety, or make her extremely loopy.

Or tomorrow might instead bring us another day like today, except with the combination of medicine and radiation burning away a bit more of the cancer without noticeable damage to any of the tissue around it, and the rest of the day spent with a strong, willful, laughing little girl.  Tomorrow might be, probably will be, what the past week of tomorrows have been: one more forward step on this new and unexpected road.

Seven Responses»

    • #1
    • Comment
    • Thu 19 Sep 2013
    • 1127
    Wendy wrote in to say...

    I am hoping that the rest of your proton tomorrows are the same as or better than your proton yesterdays. You and your family are often in my thoughts.

    • #2
    • Comment
    • Thu 19 Sep 2013
    • 1232
    Nancy Massey wrote in to say...

    Being even a little less exhausted is good news. Wishing you peace and continued progress.

    • #3
    • Comment
    • Thu 19 Sep 2013
    • 1657
    barbara gavin wrote in to say...

    In a totally different, and somewhat easier context, I have been answering the ” How ya doing?” Question with, “Working on the new normal.” Smugly aware that this will *never* be normal.

    • #4
    • Comment
    • Fri 20 Sep 2013
    • 0236
    David Weinraub wrote in to say...

    Eric,

    Just want you to know that you, Kat, and Rebecca (my daughter is named Rebecca and we, too, call her Becca) are often in my thoughts. Wishing you all strength through this process and the best possible outcome.

    • #5
    • Comment
    • Fri 20 Sep 2013
    • 1103
    Sandy Esber wrote in to say...

    Thinking of Rebecca and your whole family with prayers.

    Sandy Esber
    MetroHealth

    • #6
    • Comment
    • Sat 21 Sep 2013
    • 1103
    Harald wrote in to say...

    Eric,
    your reports and thoughts are deeply moving. I hope that your road may be a good one without too many stones in your way.

    • #7
    • Comment
    • Sat 21 Sep 2013
    • 1814
    Not Important wrote in to say...

    Eric, I was looking for some css tweaks and came across your story. It’s moving and deeply heartfelt.

    I’d say you’re doing very well considering. Keep the faith – you will get through this.

    -Liam

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