The unannounced goal for the day was to get all of my daily calories and nutrition by mouth. I decided I’d leave the question about how to handle my various pills for a later time, and would just continue to use the tube for those. My calorie target for the day was 2000.
With this in mind, I didn’t have the bag of juice that I usually use to get me started in the morning. During the hellish period of finding something that would work with my stomach when pumped through a tube, I found that juice could be used to “prime the system.” Lately I’ve been hanging a bag first thing, which trickles in while I catch a little extra time in bed. But not today.
I got up and dealt with my morning pills as usual, crushing them, mixing them with water, and pushing them through the tube with a big syringe. Then it was off to the kitchen, where I mixed up a usual batch of my Instant Breakfast potion. It’s half a cup of milk, half a cup of evaporated milk, and Instant Breakfast powder. The evaporated milk gives it more calories, so I call this an Instant Breakfast Plus, or IBP. I also made some coffee to go with it.
Only this time I didn’t put it in a bag, bring it upstairs, fit the bag’s tubing into the pump, and hook up. Instead, I got down one of our Big Red Cups, and poured it all in there. A quick zap in the microwave, and voila! A simulated mocha, worth 365 calories and 1/4 of my MDR on many vitamins and minerals.
The Big Red Cup, a small glass of water and I retired to my office. As I spent time surfing the net and composing rants for my political blog, I would take sips from the cup, mostly swallowing easily. There was some coughing, and a bit of mess, but it went pretty smoothly. Occasionally I would sip from the water glass, to cut through the milky coating that an IBP can leave in the mouth. Before long, it was done!
That was the first hurdle. So far, morning is when I’ve had the most trouble swallowing. Later in the day I’m now pretty reliably getting through an 8oz IBP in under half an hour. So, even though it was a little bumpy, I got through it, and it still didn’t take as long as pumping it would have!
From there on, it was a matter of figuring out what more I could use, on what timing, to get to my 2000 calorie mark. I set a goal of three more IBPs (without the coffee extra), for a total of 1460, spread out so that the last would be a “before-bed hot cocoa”. I kept a small containers of nuts nearby all day, and would occasionally nibble. (Though in my case “nibbling” is a lengthier process, on a nut-by-nut basis, while the bits get gradually swallowed through repeated attempts, and the occasional sip of water.) By the end of the day, I’d done in 1/4 cup of cashews, and 1/4 cup of peanuts, for 200 and 170 calories, respectively.
In the mid-afternoon, I started work on a bottle of Odwalla’s “Mo’ Beta” juice. One of the upsides of using the bags is that I’ve been able to ignore the taste of the various juices I’ve been using, and make selections more on nutritive value and calories. But I actually like the Mo’ Beta taste, and it has always sat well in my stomach. I quickly polished of half the bottle, and put the rest aside, finishing it off a bit later. 280 calories.
In the early evening, I pulled out my secret weapon. A few days ago I stopped by the store for some spiced apple cider. Eight ounces in a mug, a quick trip to the microwave, and scant seconds later I was sipping away at a fragrant and tasty, not to mention quite autumnal, beverage. Not only did it provide a full range of positive reinforcement for my excellent swallowing performance, it got me another 120 calories.
If you are compulsive at addition, you may at this point have detected that I lost track of my count. I was still planning on my 365 calorie nighttime IBP. I didn’t actually need 120 more calories. I figured that out later. Meanwhile, I really did enjoy having some hot cider.
My final calorie count for the day was actually 2230, and while it was some work, it was not extremely difficult. It’s quite conceivable that I could repeat this, and while as a diet it would be quite monotonous, I could more than survive.
I really don’t need the damn tube to keep me alive anymore.
And this is where the mundane gains its more profound meaning. It doesn’t just free me from the time-sink of the pump and the bags, and the nuisance of scheduling feedings, and the longing for tastes, and the feel of something going down my throat, it also frees me from a host of other concerns.
For months, I’ve been carrying a fear of the tube getting damaged, a fear of it clogging up, and the horrible anticipation of getting it replaced. My memories of its insertion are among my worst hospital memories. (Drugged into semi-consciousness, in great pain from the gastric warfare the spacefood down the nose tube had wrought, abetted by the gas injected to assist the procedure, helplessly dazed witness to the struggles of the resident to place the tube correctly as he made me hold my body in absurd contortion – I never want to do that again. I’m serious. Really, really, serious.)
I’ve also had irrational fears of somehow dying from the tube being damaged. This is probably an echo of living with the Hickman catheter during the period of Paul vs. The Lymphoma Monster. That was actually an IV port, but it had a similar white tube with a fitting on the end, and it also emerged from my chest, only about six inches higher. This tube ran directly into one of the major blood vessels, requiring daily shots of anti-coagulant to keep it open, and painstaking injection protocol to keep from injecting an air bubble that would travel instantly to my brain and kill me. Had the Hickman been damaged, it would have started shooting my blood everywhere. You can see how I might have some stored up fears about it, which have been hovering around its cousin, my feeding tube, since March.
So this milestone is about much more than my long-awaited swallowing improvement, more free time, and ease of scheduling. It is a major, major step in my feelings of personal safety. That portion of the back of my mind that’s been standing on guard against damage, against clogs, against infections, can stand down. God, that’s a relief.
It’s also important for my sense of identity. I don’t need an artificial apparatus to keep me alive anymore. I’m able to survive on my own again. That other portion of the back of my mind that’s been whispering about being an invalid and being dependent can shut up. I get to stop feeling like a patient, mostly. (I’ll really stop when I don’t have this tube in me anymore, and there aren’t poles all over the house.)
I’ve already written about the fear of the “what if I can’t ever swallow again” possibility. As the months went by, that one was getting harder to avoid thinking about. Now it’s been replaced by its wimpier little brother, “what if all I’m ever able to eat is liquid”, which is pretty easy to laugh at given my recent progress, and the fact that, really, if push came to shove, I’d get by. As personal worry-demons go, compared to the ones I’ve dealt with in life, it’s pretty toothless.
Another degree of freedom.
I’ve finished another IBP while I’ve been writing this, my second today. (I’m going to see about two days in a row.) I realize that I’m much more relaxed, that it feels more like it’s just another part of my day, and not the focus anymore. It’s “eating”, it’s not “feeding”. It’s just something that happens during the day, not something I have to “do”, like a chore. I had a cup nearby, I drank from it while I wrote. Now it’s done. Such a normal thing to do, something one doesn’t even think about. Unless one has been where I’ve been for the last eight months, and then it seems both mundane and sublime, and sublime because it can once again be mundane.