Don’t get the wrong idea: I do like waking up each day, because it sure beats the alternative.
But mornings, for me, are a little hellish, thanks to the ravages of cancer and treatments and surgeries. Right now when I wake up, my neck and shoulders feel really heavy. I also have to site for a moment and do some coughing, to try to bring up whatever has settled/bubbled up in my lungs for however long I’ve slept. After that, my routine goes as follows:
Give the dogs their greenies, then let the big guy out. The puppy (he is not a puppy any more) stays by my side as I make my way to the bathroom. After taking care of my own business, it’s time to remove the HME (the heat-moisture exchange filter, which takes the place of your nose, as far as your trachea is concerned, for those functions), and then remove the larytube for cleaning. The HME filter is replaced every 24 hours unless it needs to be replaced before then because it’s jammed up with mucus. After cleaning the larytube, it goes back in, I pop the new HME on, and we’re off to the kitchen.
After a quick brew of coffee and some med smashing (thyroid, gabapentin this round), its off to my desk to settle in and see what’s going on. I pour in the meds and coffee, work a bit – maybe an hour – then head back to the kitchen to make breakfast.
I’ve been trying to incorporate blenderized real meals into my diet, but the volume is problematic. I have to add so much water to whatever it is to puree it, then strain it, that I can’t “eat” as much, or there’s too much particulate to get a fairly high percentage of the actual calories down. For now, the majority of what I eat is coming from powders. I went into the hospital at 127 (pounds) and this morning weighed in at 122 (pounds). So, in addition to the complete meal replacement powder I use, I add some weight gain powder I used to use exclusively when I was working my way back from 92 (pounds). This gives me a ton of carbs and calories, without a lot of volume over what I’m already using. Breakfast also involves more med crushing, mixing, and pushing down the tube: the other half of the gabapentin, and dicyclomine. I also dump in half of a sucralfate, even though technically that should be taken a) alone (it crushes fine, but mixes/dissolves terribly unless something else is also in there), and b) an hour and a half to two hours before a meal (which is nigh on impossible, given how many times I have to eat a day). I’m trying to stay away from the pain and spasm meds and the anti-nausea/emetic drugs. I have children’s ibuprofen and acetaminophen to dump down the tube. Thankfully, no crushing because it’s a liquid. Eat up! Also let the puppy out, because now he’s ready. He can’t just go out with the big guy and do his business in the early morning.
Plow through that, which takes about an hour, then unplug the tube and get everything washed. Do my laps through the kitchen, the dining room, the living room, and do my neck and shoulder exercises while I’m doing those. Strangely enough, it’s my leg that hurts more than my neck. Then again, the last big muscle surgery I had, for the lung cancer back in 2010, when they sliced open my back, hurt like a bitch, too, and took a long time to heal. But on we go.
By now it’s been several hours. Time to clean the larytube. Again.
Next up: water and coffee while working. Every so often, I get up and do a few laps and shoulder/neck exercises, just to keep the blood flowing and so as not to have any lymphedema develop in my leg, (or worse, in my neck). When the coffee and water are gone, unplug, wash everything. Again.
If it has not rained, now would be the time I brave the great outdoors to start the first watering zone. Yesterday, we had a massive thunderstorm roll over us, and it dropped just under an inch of rain, so today, we’re good. No watering.
Back to the desk, and work.
Repeat, repeat, repeat, repeat. I usually eat about six times a day. I’m also cleaning the larytube every three hours (or less, if I feel it’s all gunked up).
As you can imagine, this constant hooking up/unhooking/cleaning stuff just dominates my entire day. I’m sure a day will come that I’m not constantly scrubbing the larytube of gunk. At least I hope so.
My folllowups with the plastic surgeon and the ENT are both on the 14th, back to back. I should get my staples out then, and the next step will be a swallow test. I cannot wait to see if I can actually eat. Because if I went through all this and I still cannot eat, I will be incredibly pissed off.
No gunky, nasty pics this time, boys and girls. But for anyone stumbling across this because they are a laryngectomee or will be facing a total laryngectomy and permanent stoma: I’ll post some up later. Just so you know you are not alone, it can look really crappy and dried up and gross, and (I am not a doctor, remember) it will get better. At least to the point where you can go back to your life unless you’re a competitive swimmer or diver or something. That’s probably history. But for normal people, something akin to a normal life will probably work out.
Until next time, peeps: be well.