September 22, 2017
The funny thing about writing is that sometimes it comes so naturally and easy and it flows from your fingertips. You have so much to say and have no problem saying it, and then some. But it can also be an extremely frustrating, laborious and boring undertaking when you don't have that mojo going and grooving for you. I think that's the territory I've been traipsing through the last few weeks - struggling to write updates that keep you all informed and (somewhat) entertained, myself included. Plus prepping for my two night classes and working my "regular" day agency job has been somewhat all-consuming and energy-sucking leaving me a withered soul without any Zip-a-Dee-Doo-Dah to do dis dat and de other thing.
So let me tell you about our gal Abby and what's been going on the last week or so and I can mentally get it off my mind. Chemo treatments finished- check. Two more treatments of radiation to go- check. Acupuncture this past Wednesday- check. Palliative care appt set at MGH Boston in 2 weeks- check. ENT appt set for next week- check. VNA appt this Wednesday and next- check. Reorder medical supplies end of week- check. Continue chuckling at each invoice for a $2000 ambulance ride (plus $60 per mile) as it slimes its way slug-like into my mailbox? Am I living in the check republic.? Check.
Every day is still continues to be an adventure, an adventure in something medical, animal, vegetable and sure, mineral. As Abby's radiation has progressed her secretions have continued to be, well let's just say consistent and omnipresent. Her radiation oncologist pretty much said that it would be like this, so it's to be expected, or should I say expectorant. But it still can be scary shit, and seeing someone you love coughing and choking and gagging just sucks and relying on a bunch of machines sucks too, but I've made my peace with these mechanical devices as they're here to help and despite the noise level that borders on a construction site at times, they're necessary, and maybe with a kick-ass paint job or some spiffy decals they'd even look cool in the bedroom. Hey- my Industrial Design pals out there - boy do I got a redesign job for you.
Guess I wasn't aware of this, but there's definitely a loneliness that comes with sickness. No matter how many people you have at your side, around you, or in your circle of friends and family, there's no one that can sit inside your head and coddle and cradle your brain and fend off the emotions you are feeling. I know therapy can help with this, and at some point I'm sure we both will talk to someone whether together, apart or most likely a combo of the two. But regardless, I know Abby has a lot of feelings she can't or doesn't express and sometimes I can see and feel the loneliness on her face and in her expression. I can sit by her and hold her hand and be a cheerleader but it doesn't make those feelings any less real or scary. It's what her/our life is right now. I feel very alone at times too, no matter how busy I am and how chock-a-block full my hours, my minutes are. I've certainly had enough fun on Friday and Saturday nights to last me a lifetime, and then some, but the vestiges of our/my old life still are imprinted on me/us and I've been left wondering what I'm doing eating alone downstairs (I really don't eat in front of Abby, btw) on a Friday night, feeling sorry for myself. It's only happened a couple of times and before you all reach for the Kleenex and start feeling sorry for me, fear not, it's generally OK, and I'm not moping around like a giant sad Basset hound, ears drooping into the water bowl (or Tito' glass maybe) every time you drink (Barney, our Basset was crazy but lovable but ultimately kinda crazy and I'm not following in his footsteps). But you're still dealing with these things on your own terms and your brain is going to spin it's circles around all this new information and twist it this way and that. It reminds me of those cotton candy machines where they take the paper cone and stick it into the circular drum and the sugar winds it's way around the cone in an endless cyclone. And as gross as it may seem, that's how I'd describe what suctioning can be like as I twirl the thin hose (that's connected to the suction machine) inside her inner canulla trach tube trying to grab as much mucus as I can. I'm trying to think of it as an art form at this point as I wrestle with mucus instead of paint (or pick your medium), trying to coax it out of the tube without Abby Trotter Grant gagging, which in turn creates more mucus which means more suctioning. It's a fine line; like I said, an art form. But I don't see it catching on in any galleries that I know of.
Today is Abby's second-to-last day of radiation. For the past week or so as the secretions have continued to increase due to the radiation and its effects, we've had to do suctioning right before treatment, in a room right outside where she receives it. We have a fair amount of intimacy with the room, as it's a sort of way station where you go to wait when coming via ambulance for your appointments. It has a shortage of electrical outlets (I know, weird) but being a veteran I'm familiar with what I can unplug and what you shouldn't. At one point I was carrying around my own smallish surge protector. Always be prepared, and I'm no Boy Scout.
Abby's trachea tube and the inner canulla tube emit a variety of sounds, depending upon how congested she is. There's "the growl" which yes, is akin to a dog growl- I think she secretly uses it for when she's pissed at me. "The purr" which is kitty-like and a more mild, almost gentle sound that either goes away or becomes a more lion-like roar. Then there's "the trumpet" with its sort of musical quality which I heard yesterday and it reminded me of Temple and the shofar, at least the shofar when attemptedly played by a very young child. I bring this is up because we heard the cat purr as we walked into MGH this morning and gave each other a sly smile/grin which was a funny moment on a rather gloomyish day out there.
Looking forward to having no hospital or doctor or nurse appointments the next couple of days - just lots of grading of projects/papers, and maybe I get to catch up on Fear the Walking Dead, which has come into its own I think and also reminds me that although things aren't exactly hunky-dory at our house these days, at least we are still able to receive wonderful medical help and marvels without the fear of a doctor or nurse trying to eat us.
Thank you all for your continued kindness, patience, caring, generosity and prayers and spirit. Love to you and yours from both of us, and from our terrific, hard-working, mostly nose-to-the-grindstone kids whom I still only have one decent current picture of, Aliza Grant and Ben Grant.
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