It’s Cancer. Again.



It’s tangled up in…vessels? veins? arteries? The epiglottis? Isn’t that the dangly thing in the back? Is that really what he said? I should have asked more questions. I should have asked him to label the photos – the colorful cancer-filled photos the surgeon handed me along with the news that



I had to hold on to those photos and that news
all by myself
for 2.5 hours,
pacing around the hospital,
watching the screen to know what stage of Post-Op Recovery he was in,
wondering if the surgeon had told him the news too,
or if I would be the one to tell him that



As I paced, I had calming music blaring into my earbuds, to drown out the daytime talk shows and soap operas coming through the screens and the surgery reports being given to other families in this terrible waiting room.

Because of the earbuds, it took me a moment to realize that a random person in scrubs was talking to me.
I unplugged and heard her say,
“Your boots and your poncho are amazing! The combination of the two are stunning really. Just stunning.”

Now I am all about random acts of kindness, compliments, spreading love, etc. etc.


In that moment I was actually stunned. Not by my fashion choices, but by the fact that



This is cancer #7…though if it’s the second time it’s in the throat can I count it as a new one? I’m going to.

Cancer #7.

He has had cancers that were small, removed in outpatient procedures from which he healed in a matter of days.
He has had cancers that required removal of half of his tongue, his bladder, his prostate, strings of lymph nodes.

Cancers that were short-lived, but still count on the list, because any cancer is terrifying
Cancers that required full-day surgeries, ICU stays, medically induced comas, tracheotomies, home nursing care, months of therapies to recover.

We are in an especially heinous type of purgatory at the moment.

We know the cancer is there. We have shiny pictures to prove it.

We don’t yet know how extensive its reach is.

We don’t yet know the plan
How fiery the hell we’re about to walk into will be.

No one does.

There is no clear protocol for a guy like him with this rare disease.

And so messages come pouring in from fellow patients and researchers with tales of people they heard of once who tried this one thing and maybe I should check it out.

I probably should.
I should collect all the stories,
Do all the research,
Convene all the people.

But right now,
I am trying to make it through the day.

I am
trying to keep upcoming appointments straight,
making sure he’s recovering from the two procedures of the week,
maintaining communication with family far and wide,
trying to complete work deadlines that are due in the upcoming weeks, knowing there’s a good chance my calendar is about to fill up,
spending quality time with our girl, to make sure she isn’t lost in this mess,
struggling to figure out
how, exactly,

to breathe

knowing that




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6 Responses

  1. Not enough swear words and places to say them, but I am so sorry it’s cancer again. And that this stupid disease makes it so much harder to treat the very same cancers that it causes. OK universe, we get the irony, but enough already. Sending you and your family lots of hugs from afar.

  2. In hindsight, Allison, I am glad that Sean did not know about FA earlier in life. You two had for a time the blissful ignorance to live life and love without storm clouds during the early years of your lives together. It’s horrible that anyone has to endure what FA throws in our faces. Wishing we could hug you all in person and wrap you up in life preservers for what comes next. We’ll be here, praying, swearing at FA, and sending love.

    1. It’s true, Mary Ann! We often wonder how life would have been different if he’d been diagnosed at an earlier age. Glad we had all those years without knowing what FA was. Wish we were still living in that world.

  3. This is such a remarkable description of your experience; I hope putting this down in words, in the poetic way that you do, brings you at least a little bit of relief at this time of multiple approaching storms. I am thinking of you, and thinking of Sean. Just know that people out here in the ether care, and want to contribute to the annihilation of this scourge that is FA.

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