There Are No Words: 2016.08.25


Energy Budget Estimate — 2015: ?; 2016: 50¢

Well, the Ivy Lee method works.

Well, it works well enough.

Well, it got me started.

For daily tasks like dog walking and getting dressed and achieving bodily cleanliness it’s not so useful. That’s OK. I have devised a cunning task list that has TWO columns instead of one. Some tasks are “deeds” that once done are done for good. Some tasks recur every day. When I work out the modified Ivy/James method I’ll let you know.

I spent about six hours on Change.FAIL today. My list from yesterday was:

  1. Edit video from last Change.FAIL Podcast episode.
  2. Blog Post to Medium (tomorrow’s entry to this log).
  3. Remove construction detritus from yard.
  4. Walk the dogs.
  5. Spend 1h writing the short story Journeyman (a tale that takes place is a world I came up with a long time ago with friends).
  6. Finish production process for RSS feeds for Change.FAIL podcast.

Starting on#1 I discovered that almost all the episodes from the beta phase need to be re-edited and reissued. That’s not a problem per se, but it does redefine the first item on my list. I’m re-editing the video and audio from the first beta ‘cast to get ready to start up in September. The intent is to publish every week, but we’ll see.

This post is #2. No, not that kind of #2. I do not neet prunes or Colon Blow cereal.

#3 was not an option with heat and the energy budget.

#4 was pleasant, though the boys were moving pretty slowly. It’s easy to forget that the temperature at ground level can be 20°C hotter than the temperature above your knees.

#5 and #6 were deferred.

The new list, then, is essentially the same as before, recognizing that there are things that have to be done each day no matter what.

  1. Edit video from Change.FAIL Podcasts.
  2. Blog Post to Medium (tomorrow’s entry to this log).
  3. Remove construction detritus from yard.
  4. Walk the dogs.
  5. Spend 1h writing the short story Journeyman (a tale that takes place is a world I came up with a long time ago with friends).
  6. Finish production process for RSS feeds for Change.FAIL podcast.

Overall, it was a productive day, and I felt reasonably good about that.

2015.08.25: Homegoing

This day a year ago I came home from the hospital to start a new kind of life.

8:00AM – Eviction Notice: Get Yer Butt Outta Our Bed

They’re sending me home today.
Yes, that deadpan delivery was intentional. I’m very excited.
There is a lot to do this morning (if last eviction is any indicator) so I’ll likely not post until this evening. Until then, a few points to ponder in the pictures.
My question list for the doctors was extensive today. No surprises, but I was glad to get a sense of my schedule for the next few weeks. I’m not sure about when I’ll see the SLP or nutritionist here, but in a week I’ll be back to get the rest of the staples out, and in 3 weeks the stitches come out of my stoma. I won’t see the radiation oncologist until a little later, but I’ll see if I can get my questions answered sooner.

On that last item, I recall the hospital being quite keen on kicking me out. The day was a blur, really.

They took out half the staples – every second one. Maybe I should have kept the metal to make a chain? Naaaaaaah.

I wasn’t too keen on what the camera had to say about my edema, but I was dealing with it.

I’m too sexy for my tube, too sexy for my tube, ‘cause I’m no noob.
Wha…? Where did THOSE come from?

I think the typos are hilarious.

10:00AM – Chaotic Morning

I’m still here, in part because I want to actually eat some pureed food before I leave. My breakfast never made it to me (shit happens, I guess). Mom is taking some of my accumulated stuff down to the car while I await my slurry. Then we go home.
I have spoken to CCAC, the discharge nurse, the physiotherapist (about my back), and several others this morning. I will have a followup appointment with Dr. H. (one of the surgeons) next week (call to confirm) when the rest of my staples come out.
Everyone seems harried today. There are some staff in the hall – I can’t tell if they are nurses or what – arguing loudly about doing some task. Doesn’t instill confidence, despite the fact that I have had pretty good care here.
Now I’m tired and what to go home and pet my dogs and crawl into my bed and take a nap.
Huh. I’m feeling really sad right now. Not sure exactly why, but there it is.

I forgot to note that I met another laryngectomee – another person who has had a laryngectomy – on the 23rd. Kevin has given me some great advice and support in the last year. He had this to say about my sadness:

Kevin Berry: Congrats on being busted out. Take it easy for the first few days. I thought I was superman at first until I passed out and fell through a glass table on day 3 of freedom. By the way, that sadness is pretty common. I think it is a combination of the makeshift bonds we develop during crisis, and the fact that today is the first time you have to live in the real world with your new reality. Good luck, I am sure you will do great.

Several other people provided insights too.

Allison Quensen Blatt: I can’t explain the sadness, but it makes sense…although I can’t explain why it makes sense.
Andrew Thompson: You’re leaving a place where your life was saved, and all the people who participated in that. Of course its an emotional, inexplicable experience. Who would expect otherwise?
Tamara Shand: Transitions can be hard even when you are moving to something better. I think sadness also alerts us that something was important and meaningful to us. Embrace it and then let it move through you. Wishing you a very good return home!
Jill: Loads of emotions to follow… It’s normal & you kinda have to just go with it. Sometimes there is no reason… You’re just sad. You’ve already been through a lot and have a lot more to find your way through. Leaving the hospital is a massive milestone of which to be proud & sad gets to be part of that too. Hugs.

My response:

Julian Sammy: Thanks for your advice and support, Kevin, Allison, Andrew, Tamara, and Arlan. I don’t get sad that often, which makes it a more powerful experience, I guess. I’m not going to wallow it in, but I’m not pushing it away, either.
Your thoughts on the causes make a lot of sense. I think part of it is the amazing and wonderful support that I have had from folks like you – words of encouragement, insights, advice, flowers, visits, and humour – it is a lot. I’m in another group where someone mentioned that he had started to cry over the littlest things, like a commercial about a food he likes. I’m not that sappy (yet?) but I am sad and moved, and grateful to my community.
I had poutyface.
Also, I promise to not attempt to do anything TOO strenuous, Kevin. I’m doing pretty well here so far, and don’t need to muck it up.

6:00PM – Home

I recall being anxious about coming home, going from constant care and attention to being mostly alone and my own responsibility.

I flew home home, and boy are my arms tired.
It’s true. Eight days and seven nights at Sunnybrook for a pretty serious surgery is flying home. The doctors said that the very fastest I could get home would be a week, but that was a very unlikely scenario. It was much more likely that I would be there for ten days to two weeks, and depending on what happened, could be there up to four weeks.
So I flew home, but that’s not why my arms are tired.
The range of motion I have for my shoulders has dramatically changed following the surgery. I don’t really have the stomach or the knowledge to read through the whole process of a neck dissection and total laryngectomy but I have started to go through the excellent material Dr. Itzhak Brook has put together. The practical outcome is that I can’t make a flapping motion with my arms at all, because I don’t have the strength to raise them up. (Not totally true. With great effort I can just get past parallel and get them up over my head.)
The physiotherapist I saw today was very helpful. She gave me a bunch of exercises to do to help with my back pain,* and to start to loosen up the muscles in my neck and shoulders. I did them with her to try to learn them quickly. Of course that means that my arms are very tired now.
So here I sit, soup filled and gulping warm tea,**** in my Doctor Who bathrobe and my SGU t-shirt***** and ignoring my dogs, who think it is dinner time (it is close).
I’ll take them for a short stroll after I have fed them and figured out how I’m going to enscarfen my neck.
Then I think I’ll start writing my Last Words Letter for this week. I’ll post some of them (with permission, anonymity or both) after I have delivered them.
Be well.
– j
* The back pain is up between my shoulder blades, where I have a few twisted vertebrae.** The yoga I normally do to release those bones is relatively simple.*** At the hospital it was impossible, with the tubes restricting my motion in sometimes painful ways. Now it’s just hard.
** Adult onset scoliosis when I was in my mid late 20s or early 30s. It is less bend than most people are born with, though. My doctor used to comment on how unusually straight my spine was as I was growing up.
*** You’d think I’d be able to remember the names of the poses, right? Ha! Here’s what I do, if you care about that sort of thing.
1. Clasp my hands over my head, elbows straight. Lower my shoulders and lift my chest, while reaching for the sky.
2. Lean to each side without twisting, keeping hips and shoulders squarely forward. Extended arms point to the sides, with the lower arm pushing the upper arm into a stretch. This is quite difficult now, but possible. It feels very good.
3. Arch back with my chest held high, extended arms pointing behind me. I imagine that my body is being lifted off the floor by my sternum. That seems to engage the right muscles and balance to allow for a fairly deep bend. It still works too, mostly, though I can’t go very far now.
4. Lean forward from the waist, keeping arms straight and aligned with my flat back, until my torso and arms are parallel to the floor. This is a no go now. Once I’m a few degrees past vertical in that forward lean I haven’t the strength to keep my arms up. I modify the pose to lower my arms in front of me first, and continue.
5. Let arms and back go limp, dangling down from the hips. Flop around a bit to loosen things up. This is mostly ok now too. I can grab my toes and pull still, which usually causes the vertebrae to pop pop pop back into position.
**** Big swallows are much easier than small ones. The minimum is 10mL, based on our kitchenware.
***** Modified to accept a trache tube and surgical cravat (mask) about three weeks ago.
This picture is from 2016.08.26, as I finish up the blog entry from yesterday. In some ways, not a lot has changed.

Well, now that I’m finished with the blog entry for that Tuesday in 2015 and Thursday in 2016, time to start in on the post for Wed/Fri.

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