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Hoping for Uncertainty

With a lot of cancers, including the cancer that Rebecca has, the best you can hope for is an ongoing state of uncertainty.

At the moment, we’re in our month-long break.  The purpose behind this rest is to let her brain settle down from six and a half weeks of radiation treatments.  That’s enough time to let any swelling subside.  At the end of that break, just before Thanksgiving, she gets her first post-proton MRI, in order to establish a baseline.

The very best result we can hope for is to not know if there’s still cancer in there or not.  If her MRI looks clear, if all the structures look like they should and the brain tissue looks relatively undamaged and there’s nothing new and deadly, then all we know is that there is no evidence of cancerous growth—but absence of evidence is not evidence of absence.  Wondrous as it is, medical science has not yet developed imaging with enough detail and discrimination to pick out cancerous cells hiding among healthy cells.

The other result, the certain result, is that we find out, from seeing a tumor or other significantly abnormal result, that the cancer is still there and very aggressively attacking our daughter.  In that case, we’ll most likely be put in touch with hospice services.

Assuming that the baseline MRI and the ongoing blood tests show nothing obvious to worry about, we will proceed with an aggressive chemotherapy regimen.  As we do, every couple of months, a new MRI will be taken.  As with the baseline, the point of these MRIs is to make sure no tumors are growing in spite of the chemotherapy.  If not, we continue with the treatments, hoping to kill whatever microscopic bits of cancer might still be there, hidden between the neurons of her brain and the pixels of the images.

All the time wondering if all the cancer has already been killed, and we’re just pouring more chemotherapy agents into her to no purpose, like firing artillery barrages into a city long since abandoned by enemy forces.  All the time knowing that we can’t take the chance of stopping too soon, just in case there’s even a single cancerous cell left.

After a year of chemotherapy—assuming we make it that far—then we decide whether we should continue further, or call a halt.  I can’t imagine what we’ll be feeling by then, how we will bias ourselves.  Partly because I don’t know yet how the chemotherapy will affect Rebecca, so I don’t know what we’ll be feeling after a year of side effects.  Maybe we’ll be ready to take any chance to end the suffering of side effects.  Maybe we’ll be ready to take any chance to make sure all her suffering was not in vain.  Or maybe there won’t have been much suffering; everyone has a different reaction to the drugs, and some people have very few side effects.  I can’t know until then.  Assuming we make it that far.

After the chemotherapy is finally done, whenever that happens, then Rebecca will still get regular MRIs, all with the same purpose: to make sure nothing malignant is growing.  Every three months for the first couple of years, then maybe every six months for a few years, and then, with any luck at all, every year for the rest of her life.  And always, every time, the best possible result will be this: as of now, nothing has gone wrong.

I have lived with this exact uncertainty my whole remembered life, so this is not as difficult for me as it might have been, but I’ve noticed that this is the facet of our future that seems to horrify people the most.  I think most people have a vague sense that cancer is a disease that can be definitively cured—that it comes, it’s attacked with treatments that can be debilitating, and that eventually, if things go well, you can declare that the patient is cured.  That eventually, you can relax into the knowledge that the terror is over.

It’s never over.  You can never relax.  You can only get used to your new, heightened awareness of the horrible uncertainty, and to the probably new and unwelcome idea that uncertainty is and will remain the state in which you fervently hope to dwell, for however many days are left.

10 Responses»

    • #1
    • Comment
    • Mon 11 Nov 2013
    • 1112
    Lydia Mann wrote in to say...

    “I have lived with this exact uncertainty my whole remembered life” > well stated, as usual, and a further hint as to your live life well while you’re living it perspective.
    Thank you for bringing us up-to-date and helping me re-focus, again and again. Sending big love to you all.

    • #2
    • Comment
    • Mon 11 Nov 2013
    • 1719
    Michelle wrote in to say...

    I just wanted to say that my thoughts are with you in this difficult time of your life. I hope the very best for your daughter and your family.

    • #3
    • Comment
    • Mon 11 Nov 2013
    • 1740
    Mark Newhouse wrote in to say...

    “Assuming we make it that far.”

    Poignant words no matter who they’re spoken for, but all the more poignant in that they are for the young daughter of a friend. Godspeed to Rebecca and the entire Meyer family. You are all in my prayers.

    • #4
    • Comment
    • Tue 12 Nov 2013
    • 1037
    Pothi wrote in to say...

    Our thoughts are with you and Rebecca. Wishing for a speedy recovery!

    • #5
    • Comment
    • Tue 12 Nov 2013
    • 1139
    Dan Guy wrote in to say...

    I assume that you’re already familiar with this XKCD comic, which your post called pointedly to mind.

    Best wishes…

    • #6
    • Comment
    • Tue 12 Nov 2013
    • 1308
    Forrest Swilling wrote in to say...

    Thoughts and best wishes are with you and yours Eric.

    • #7
    • Comment
    • Tue 12 Nov 2013
    • 1423
    Eric Meyer wrote in to say...

    Dan—actually, I was not familiar with that XKCD. It was interesting to see how Randall and I phrased things in very similar ways.

    • #8
    • Comment
    • Wed 13 Nov 2013
    • 0642
    Jim Johnson wrote in to say...

    Eric, you write so eloquently about such a difficult topic. Becoming comfortable with uncertainty is something we could all benefit from. I think of you and your family often. Wishing you and your family all the best, with prayers for peace and healing.
    Om mani padme hum
    Om tare tuttare ture svaha
    _/|\_

    • #9
    • Comment
    • Thu 21 Nov 2013
    • 2146
    Chris Sheridan wrote in to say...

    Thinking of you Becca! Bailey misses her friend.

    • #10
    • Comment
    • Thu 21 Nov 2013
    • 2332
    Jim Gablick wrote in to say...

    So strange to run across this today, having just found out that my wife has cancer for the second time, although this instance appears unrelated to her first time through. The first time, I didn’t know what to do or expect, which was somehow easier, as we just took the next indicated step along the way, hoped for the best, and were lucky.

    This time is much harder. I somewhat know what to expect and somehow that makes me unsure of what to do or feel. This is not a pleasant road to travel more than once. I just hope I can be as strong for her this time as I was the last. Funny thing is, this time she seems to be handling it better than I am.

    Anyway, thanks for this article and I’ll be wishing all the best for you and yours.

    Also, thanks so much for a place and opportunity, at just the right time, to vent. I hope you don’t mind, but I certainly needed that.

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