Tubing

Alas, this is not about floating leisurely on a tube at a place like Wakulla Springs (something you should do if you have the chance).

After that last post, and after the surgery to take care of my neck – they took some lymph and tissue samples to biopsy as they drained it, and those tests were negative, yay! – I wasn’t feeling too well. In fact, I’d not been feeling 100% prior to the surgery, but went ahead with it anyway as it had been so long getting it address, and I didn’t want to change any infection running up anywhere else. What I’ve noticed, though, is that I still have a lump there just below my jaw. Something to discuss with them when I finally get my stitches out next week.

Why the vast delay in getting the stitches removed? On the 13th of February, I was having issues catching my breath, and I was having sharp pains in my chest when taking deep breaths. To me, based on experience, that meant one thing: pneumonia. Since I was having some breathing issues, it was off to the ER – a shiny new facility one of the hospitals had built down in our area.

I figured they would take a chest xray (they did) see some opaqueness (yes), give me a breathing treatment (yes), then throw some antibiotics at me and tell me goodbye (no).

Because I’d had the surgery on my neck at another hospital, they decided the way to go would be to transfer me over to the ER of that hospital. I wasn’t exactly thrilled with the proposition, as the other hospital is in the inner city and is a teaching hospital. There’s nothing wrong with either of those things, but that generally means very busy and understaffed. But away I went, transported over to the other hospital.

I arrived at 9:44 PM in the ER at that hospital on the 13th. At about 3 AM on the 14th, they put me in another ER area, a holding pen of sorts for people who are to be admitted to the hospital, and where people wait for a room. My sister waited with me. And waited. And waited. Finally, she had to leave to take my nephew to school and take care of the soul eating baby, since her hubby had to go to work. So I waited alone, and my mom came up after sunrise to wait. And wait. Somewhere between noon and 1PM, they finally moved me into a room, where I would stay for over a week.

In the meantime, because I had mentioned I had dysphagia (that’s difficulty in swallowing) and because they decided, after taking their own xrays, that yes, I had pneumonia, they put me on a clear liquids diet. And that’s when things went downhill.

I’d not really been eating well before the neck surgery, because I’d not been feeling well. I’m sure everyone knows how that is: you don’t feel entirely well, so you don’t really feel like eating or you have no appetite, or both. I’d already lost a couple more pounds that I couldn’t afford to lose from before the neck surgery to that point.

We pointed out, multiple times, that I’d not eaten anything substantial for almost a week, and that the “clear liquids” diet was not necessary, since I could actually eat. The menu I really needed would have been what they term “soft mechanical” – that is, softer foods designed for people with dentures, but actual food. Didn’t happen. They insisted on tray after tray of crap I could not eat and i one case, could not even identify. Typical tray: apple juice, pudding (too thick for me to eat), jello (difficult to eat when you can’t really move your tongue because you’re missing half of it and missing a lot of the base muscle on that side), and broth. Plus, a Boost in a range of horrific flavors: peach, strawberry, mixed berries. The peach was the grossest of them, and all had “natural and artificial flavors”, which is simply bizarre: those items are all available, even when you’re manufacturing on a huge scale. The broth was generally just a chicken bouillon cube in hot water, which is also disgusting to me. On one of the days, the broth/soup was a gray, almost slimy batch of something that was impossible to identify. I even had my mom take a smell of it, and she bravely took a tiny taste of it, and she could not identify it either. Then, some sorbet showed up on the tray, a departure from the other items, and something I could eat a bit of. However, when the ingredient list starts off with water, sugar, corn syrup, and you have mucositis, as I do, this leads to the high sugar content coating your mouth with a film that takes multiple rinses to get out.

Short version: I ate virtually nothing off the trays. That means day after day of not eating anything. They had me on the usual saline/glucose drip, but I was worried that I was basically starving to death in a hospital.

On the third day, the gastro folks came up to talk to me about inserting a feeding tube. As I thought I would be getting out of there fairly soon, and returning to be able to eat now that they’d been pumping me full of antibiotics to fight the pneumonia (and I felt much better in that regard), I declined. But I continued to feel very weak because of the not eating situation. So, after getting a a good look at myself in the mirror one morning and realizing I was looking like those poor folks who were rounded up and starved in concentration camps (not a specious comparison: I had my mom take a picture of my back, and I had bones prominently displaying instead of being covered by even a small amount of flesh) I changed my mind, as it seemed the only way to be able to get a decent amount of calories into me since I wasn’t eating off the trays.

On Friday the 17th, I had the tube placed. PAIN! I was also dealing with constant nausea and periodic heaving – dry heaving, as obviously there was nothing in my gut to bring up. Routine doses of anti-emetics helped, but didn’t always damp down the random heaving, and the undercurrent of nausea was always with me. On Saturday, they hooked up a bag of formula to the IV stand, and hooked me up for continuous feeding from it. As I’d not eaten anything in forever, the feeding began at 10ml per hour and works up to 50ml per hour. I still felt weak, but I could walk around, even though it left me drained.

Finally, on the 22nd, I was cleared to be discharged. The first order of business was a shower, and when I weighed myself before that shower, the scale read 92 pounds. I am eating by mouth once more (hooray!) but also using the tube to dump cans of formula in so I can get more calories in to help add some weight and more importantly help with the energy issue. Spring is already here, and there are tons of things that need to be done here at the ranch. As I continue to recover and am able to eat a normal amount of calories in a day, I’ll be able to have the feeding tube removed to get that annoyance out of the way. I am terribly behind on the schedule I had mapped out for the season, but being here, and even being behind, is far better than the alternative, if you know what I mean.

One really, very good thing that happened somewhere in the midst if the terrible month that was February, however, is something clicking over in my brain that woke up my love of food and cooking. For many years now, I’ve cooked for a ton of people, but not been able to eat my own cooking. Between the mucositis, trismus (inability to open my mouth very wide), xerostomia (dry mouth; extreme in my case due to getting blasted in the face by radiation, and also the reason I eventually lost all my teeth), and the fact that the bottom denture  loses its grip fast when I eat because of the missing pieces there in m mouth, it’s been terribly difficult to eat real food.

But my brain started nattering at me that there should be ways around that, and I believe this to be the case: I am now putting together selections of things to cook that will serve other people but also myself. At this moment, there are chicken thighs in a greek marinade I whipped up at 4 AM this morning in my fridge. Tomorrow, those will be lunch, and even if I am not able to each a lot of a piece, I will eat what I can of it. It my be messy. It may be painful due to the trismus. It may be tiring, as I’m not used to chewing. In the end, it will be worth it, though, so I will persevere and continue to chip away at the wall that has separated me from the foods I love for over a decade now. I may not be able to “eat” a specific piece of food – a halo orange, for instance, I cannot chew and swallow the segments of. What I can do is work to get them into my mouth and chew on them to extract the juice and some pulp, leaving behind the dry segment that (right now) goes into the trash – when I recover, those will go to the compost heap. If that’s what it takes to get through this, then that’s what I will be doing.

So there you have it peeps: February, in a nutshell, was a month where time basically stood still and is best forgotten. When I finally get the feeding tube removed, forgetting it will be much easier and I will be able to move along with Mother Nature as she defines our lives.

2 thoughts on “Tubing”

  1. Oh my dear Annette! How utterly horrible. You have been through so much this past decade. I am glad you are moving toward finding a way to eat ‘your’ food. I hope you continue to get stronger. Much love to you.
    ~bobbi

  2. Thanks, Bobbi! It is, as with all things, a work in progress. There is yet another part of this saga that I’m writing up that is kind of unpleasant, but fortunately, I’ve been working around it and am moving on from that. I figure I’ll continue to write up how the progress goes, in the event people who have been unlucky enough to have to go through some of the same things will know that they are not alone, and maybe they can learn from some of the things I’ve gone through to make their own journeys easier.

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