Sunday, September 15, 2019

Day 074 -- This Time You Have

This day’s entry should be the longest, the most intricate, the most telling of everything we’ve been through to this point, but it might serve us better as the simplest … the most raw.

A day in the emergency room after coughing up a strange mucus plug, then some hunks of bloody lung junk for a while (we could go with “hemoptysis” but we’re doing simple and raw).

At the ER via a rather urgent trip with Diane driving us there in my big boy honkin’ truck (not designed for a driver of her small stature, but she wrenches it around just fine).

At the ER, the bleeding stopped and the shortness of breath eased up.

Then, after the CT scan and x-ray:

A lesion is now “eroding” an area on my windpipe.

There is more cancer in my liver and lungs.

At the end, we spoke with a gaggle of huddling Docs on the way forward:

Looks like chemo is no longer an effective treatment. Palliative care from here on out.  And, my sledgehammer moment, when I pressed my oncologist on a “rough” best estimate of me and my cancer’s timeline.


I will go to radiation oncology next week to see if XRT (x-ray therapy) can help my airway.

Finally, as we began on Day 001 at the outset of this narrative:


A simple, raw and fitting place to move on, as I would like this to see the light of book publication while the light inside these hands still shines.

I can think of no greater end than a note from my daughter, who met us at the ER today.

We’ll leave this as we’ve gone, with her brave and loving words:

Dear Dad:

Hard day today, and you handled it well.

I am completely distraught at the thought of losing you. I love sitting next to you, talking to you, I love being your daughter. You've given me so many gifts as my Dad. You have lived a tremendously interesting, inspired, badass life.

You have some time left. What I want for you now is for you to do the things you want to do, go on adventures, sit and be still, have conversations, eat your favorite foods.


 I want to spend some of it with you. Also, I have a few requests if you can manage it. I want signed copies of all your books, and I’d love for you to make videos or voice recordings of you talking to me, to Rory, and all our children too, if you want. I always want to be able to see you, to hear your voice, for the rest of my life.

I love you so much. Let me be a part of this time you have.  I have so many happy memories with you, let's make a few more.

I love you, Erin

Friday, September 6, 2019

Day 073 -- From The Top Up

This all has to end somewhere, and because we know where all endings end, I’ll begin to end this one with another beginning.

Much has happened in these last two week’s worth of todays:

If we add some forehead-slapping intrigue to insult, my blood tests confirmed Lyme Disease. When I came home from the hospital with the news, there was a deer standing by the fake rock under the backyard crab apple tree, and I had a mad flash image that Bambi had it in for me personally.

I had LD a few years ago. After I’d found the embedded tick, the telltale classic bulls-eye bruise followed and there was only a minimal fallout of symptoms. A quick regimen of antibiotics, and it was gone and gone.

This time around, I never found a tick, but a red blotch appeared on my mid-back, and when more advanced waylays moved in (see Day Seventy-Two), everything went on hold until I was restored to all my normal subnormals.

Two weeks and a course of Doxycyline later, I’m fairly clear of them, and today we restarted chemo.

It was administered via my new central IV port, also installed since our last outing. For the record, it lies under the skin and just ABOVE the wings of my Pegasus (Day Seventy-One).

To calm any storm in a port, I was heavily sedated, the port was implanted perfectly, and my IV blood draws, infusions and contrast mediums are now one simple cinch of a pinch.

One stick. No bruises. No misses. No errors.

Today we began Docetaxel (why does that make me feel like a self-experimenting mad Incan scientist?)

The most common side effects are what happens when you put all the vowels and consonants in the English language together in a dozen random orders:

--- Stiff rotations, joint rashes, facial palpitations, irregular inflammations, swollen nausea, hot chills, cold fevers, shortness of mind, rapid emotions, sleep paralysis, and the tinsmith forgot to give me a heart.

(See what I did there? Trouble is, at this point in my cancer road and sky trip, the signs & symptoms are becoming more mix n’ match.)

My favorite? At the top of the list, says the Doc, it’s likely that I’ll go skinhead again.

The first time this happened, my hair came back wavy and dirty grey. This time, I may opt to keep it bald. At least I might outsmart Bambi from the top up and the back down.

More as we’ve gone, El

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