Stinger

Strawberry planting day at the ranch. Instead of black plastic, we use plastic flowerpots with the bottoms cut off. These go into the soil, with about two inches clear above the soil line. They are filled with soil to that two inch mark, and the strawberries go in. As they grow, we will train them over the rim. This will keep various insect type critters from going after the berries as easily as they would were the berries growing directly on the soil. It also helps with soil rot damage to the berries from the rain/watering then drying cycles we go through.

While Mom handled those, yours truly did another weeding run. When I am well, I can spend hours weeding if the gardens call for it (and right now they do) but at this moment, I pull enough weeds to fill one yard waste bag (basically, just a trash bag, but thinner), as that’s about as much as I can manage. Today I went after thistles that came up to my hip, with tons of puffball seeds just waiting to break loose and bury themselves in other areas of the garden. The simplest way to deal with seeding thistle: gently bend the stem with the puffballs – very, very gently, so as to not knock the puffballs yourself – and then use pruners to snip the stem about six inches or so under the puffballs. If the stem has already branched, snip six inches or so under the branch. Once snipped, gently – very gently – shove the clipped stem puffball first into a bag. Repeat as necessary. Once the puffballs are gone, snip the plant into manageable pieces and bag those, then pull the remainder of the plant up by the root.

In one area where I was pulling thistle, I encountered some stinging nettle. I reached for it before I realized what I was going for, and luckily, I did not grab a whole handful of it. The only stings I got were on my left index finger and the pad of my right hand. Yes, I weed bare-handed. I find that I just can’t grasp the weeds and pull them entirely, with their roots, out of the soil. For nettle, though, I made an exception, got my gloves, and pulled the giant thing out. Nettle spreads by rhizomes it sends out, so the actual root area can take some work to get to, as you have to work through the outer areas of the thing before you can pull the rest of it out and get the root. While stinging nettle does have some medicinal use, we do not grow it intentionally here, just as we do not grow purslane, which was the weed of the year when we first put in the gardens. This time around, the weeds of the year appear to be thistle and hawkweed, neither of which we want hanging around. There are masses of them, and I’m considering hiring some day labor to get all the weeding done, as there is no way I’ll be able to get it all done so my  plants can be put out.

Switching gears: those of you who stumbled across this here blog because of searches for oral cancer and/or tube feeding and/or medical things: welcome! A tip for those feeding via PEG, if you’re like me and have to do it slowly: when feeding the rather thick usual formula using the gravity drip method by  syringe, once you’ve poured some formula in, pour in some water as well. The water will help dilute the formula and prevent the formula from gumming up the tube opening (and the syringe opening).

(My dog Einstein grabbing a nap in the background.)

Once that run completes, pour about 20 ml or so of water down the tube as a mild flush to get any formula residue out of the tube opening. That way, the next round in about 10-15 minutes won’t encounter any blockages when you pour it down. This also helps keep your fluid uptake up, which will be better for you and keep the doctors happy. I run formula at a rate of 20-30 ml plus water every 15 minutes. One can of the formula I use is 237 ml, so it takes about two hours to complete a feed session with formula for me. In good sessions when I don’t feel like I’m going to burst or throw up (dry heaves, really), I can press that interval down to about five minutes or so.When the feeding session is complete, flush the tube with more water.

Another tip for those stuck with a PEG who have, or had oral cancer, and have to undergo radiation to the head and neck: keep eating and drinking by mouth if at all possible – even if it takes pain meds to do it – and do exercises to keep your mouth opening as wide as possible. Eating and drinking keeps the muscles working and helps deal with the inevitable scar tissue buildup, and also helps keep your gallbladder happy, by giving it something to do.  Since I didn’t, when I went back to eating by mouth after nine months on the tube, my gallbladder had basically turned into a bag of stones, and the pain from it trying to do anything was excruciating, ultimately resulting in another surgery to have it removed. The mouth opening exercises are as simple as continuing to open your mouth as wide as you can and holding it for ten seconds, doing five to ten reps of that, four or five times a day. Trismus is a horrible consequence of radiation therapy, and you don’t want to wind up with a seriously limited opening like I have, at about 13 mm. If you’re already past all the treatment, and you are dealing with trismus, do stretching exercises every day. In both cases, working with multiple sets every day instead of one set once a day seems to be better, based on the various papers I’ve read. Most utility treatment recommendations involve tongue depressors, but I have used a Therabite previously. Unfortunately, I have not been diligent in using it over the years. Since my unexpected hospital stay, however, I’m getting myself in order on that, and I’m now using it while I feed. I am aiming for five sessions a day, with ten reps per session, holding my mouth open for seven seconds each time. It can be painful, but the benefits far outweigh something that can be dealt with  by taking Advil/Tylenol or pain meds. There are other things you can do to make an effort to prevent trismus or help with it if you have developed it. A tip for Therabite use: once the pads are on the mouthpiece, I slip a sandwich bag over them when using it. That way, I avoid the necessity of changing the pads often due to slobber/drool/mucous all over them. Teeth in or teeth out? That’s up to you. Since my opening is so limited, I have to use it with teeth out, as I can’t fit it in my mouth when wearing them.

Time for another feed. Be well, peeps, and I’ll catch you next time.

Saturday ramble

Typing this up after a long day at the ranch, with Julie & Julia playing in the background. I love this movie, in both parts: Amy Adams does a great job as a foodie stuck in a soul-sucking job, cooking her way through a classic, and Meryl Streep is, well, Meryl Streep, nailing Julia Child. I read the original blog, and the movie is not half bad at reflecting it. The lobster scene (Julie) is hysterical.

Most of the long day was consumed by actual work work. For some reason, although weekends are generally slack, there were a ton (relatively speaking) of people popping up with issues that needed to be resolved. Such is life – after all, it isn’t as if I’m well enough to be spending an entire day in the gardens and with the bees, working on all the things that need to be done. But! I did manage one bag of pulled weeds, so that’s a start.

I had thought I’d go back out and do another, but my abs and my back put the kibosh on that idea.

Yesterday, one of the buttons that secures the feeding tube fell out of my lap when I stood up. This is not a huge deal, as they have to be snipped  off anyway (and I have an appointment with the GI dude next month to do just that).

The sutures connect the button to the flat part of the tube apparatus on the outside and on the inside, to another button holding the balloon. There are four buttons, or there were: this one I found, and when I did, I realized another one had also come off by its own, but I’ve no idea where that one landed. What happens to the inside button? What usually happens to stuff inside your stomach that the stomach acids are unable to digest? Yep. But I’m not digging around for them on the other end. I’m going to trust that the body knows what it’s doing. At least most of the time.

Someone asked about the tzatziki sauce I made the weekend after escaping the hospital.

It’s a very simple sauce, and one that could go with almost anything, not just gyros or other Greek food. A combination of cucumbers, greek yogurt, lemon, garlic, dill, and a bit of salt and pepper – that’s it!

Here’s your ingredient list:

One cucumber, seeded, finely diced and drained. A cup of plain Greek yogurt. Two teaspoons of lemon juice (plus a little zest, if you like). Two tablespoons of fresh dill, chopped, OR two teaspoons of dried, chopped or powdered dill. Two cloves of garlic, or a bit more if you love a good garlicky sauce (I used four). Salt and pepper to taste.

Mix all ingredients together except the salt and pepper very well. Salt and pepper to taste. Toss it into the fridge to chill out for a bit, then  slather it on stuff you’re eating. Simple!

Meanwhile, late this afternoon, Mom whipped up a pan of shepherd’s pie, which was lovely, and guess who ate a bit?

Delicious. And yes, that is a toddler-sized bowl. Got a problem with it?

Moving on, one of the interesting things about having a feeding tube is gas bubbles. Now, we all know that usually gas bubbles escape out one end or the other, one end at times perhaps creating a bit of social awkwardness. With the tube, sometimes the gas bubbles want to escape where the tube enters the abdomen. And they do, in fact, escape, with a second or two of intense pain as the bubble works its way through the very small, almost invisible gap between tube and skin. This does not mean the fitting is leaking even with the gas is getting out through that tiny space. A little bit of schmutz does build up around the perimeter of the tube, but that, while kind of gross, is easy enough to clean off. The escaping gas is something I’ve taken to mean that my stomach is somewhat empty and ready for another feeding. At this time of night, will be formula. It’s also time for meds.

 

Now, I don’t take all of these all the time, nor all at the same time of the ones I have to take on certain schedules except for the first round in the morning. I never imagined, ever, that I would be the one in the family with a drawer full of meds, but here we are, two cancers, one gallbladder removal, one neck surgery, and one extended pneumonia-created hospital stay later. The cans there on the right are the formula that I pour down the tube, one can per feeding. The mortar and pestle is for grinding the tablets into powder so they can be mixed with water and swallowed – or, in my current situation, poured through the tube. The benadryl is to help keep the mucositis and the sinus drainage to a dull roar and from choking me with goo in my throat. This is your life after cancer, surgery, chemo, and radiation. I’d recommend not having it.

With that, I’ll wrap up this entry and get myself set up for a feeding. It sounds simple, but it’s rather involved, and the actual feeding takes almost two hours. I’ll take a picture once I’m set up this evening so you can see what a life on this side of food is like.

 

Life is complicated

The last post about these irritating medical issues was rather optimistic about the eating regularly again (by mouth) and using the feeding tube as a supplemental agent to that. We’ll discuss that, but first, a bit about the chicken I mentioned.

It was delicious. Seriously good, after marinating for 24 hours in a mix of greek yogurt, olive oil, crushed garlic, salt, and pepper. I seared those off on the stovetop in a hot pan, then transferred them to the oven to finish. While they were finishing, I made a tzatziki sauce to go with them, and it turned out fantastically – amazing, given that it’s been forever since I made one. I added extra garlic, and it was, quite literally, the best I’ve ever had. I’m not slapping myself on the back as the best cook ever, but I could eat a bowl of the stuff on its own and be happy, and even my mother, who is not normally one for this sort of thing, judged it to be be excellent. I managed some chicken and the rice I’d made on the side, helped along by the tzatziki to get it swallowed. One thing about dysphagia and mucositis, if you, gentle reader, have stumbled across this during a search: sauces and gravies are generally your friend. (Note: I am not a doctor or medical professional – do not take what I write here as medical advice of any sort, and check with your doctor(s) about stuff, not random things you read on the internet).

That was this past Friday. I think I’d had a couple of cans of the formula in addition to the chicken and rice, and an orange or two. Saturday, I had some of the leftovers, along with a couple more cans. Sunday, more cans. And we ran out of cans from the first delivery. This is where things start going badly.

We’d ordered more formula from the folks who handle that on Friday, and thought from the way they talked the couple of cases we’d ordered would be arriving on Monday. That turned out not to be the case. On Monday, I was feeling worse because I’d not been able to take down enough by mouth. I also had to head out to get some bloodwork done to recheck my kidney function, as of course one of the issues with not eating/malnutrition can be kidney function problems. They had been abnormal in the hospital, but had been improving once the tube was in place and I was on continuous feeding. Off we went, and they took blood and had me pee in a cup. Idiotically, I’d not even thought about the latter, but it makes perfect sense, of course: kidneys, duh! Fortunately, I managed to give them just enough to deal with. Then, back home, where I continued to feel like total crap because I couldn’t get enough into my piehole.

Tuesday, I had an appointment to finally get the stitches out of my neck, one day shy of a month after the surgery and three weeks past the original removal date. I was feeling so weak I wondered if we should call them and reschedule, but we decided they really needed to come out, so, with the help of my sister, who has been a rock through all this, mom took me up to the hospital, and my sister had commandeered a wheelchair so I didn’t have to totter around in my state to get to where we needed to be. The building where this appointment was has a cafeteria on the ground floor opposite the entrance to the part of the building where my doctors are, and the smell of whatever they were cooking was overpowering and made me ant to vomit. Through my reading, I’ve found this can be a problem for people recovering from things like this. But, we made it through that, made it through stitch removal, and the doctor said flat out he is at a loss about this lump. All the scans have shown nothing, the biopsy was negative, etc. – in effect, he’s unable to fix something that does not show a problem. If I’d had the energy, I’d have told him I knew that issue quite well, given the type of work I do. He suggested another PET scan – this uses nuclear tracers to light up possible cancerous areas, as cancer cells glom on to every bit of sugar they can get their greedy suckers on – but since I just had one a couple months ago, it wouldn’t be possible to have another for at least another three months. That’s fine, because even if it had already been six months, there’s no way I’d be able to do one right now anyway. So, the lump thing is a wait and watch thing.

Stitches out, we returned home, and thankfully, the case of formula had been delivered and was waiting for me. I immediately went back on the feeding schedule, or as close as I can get to it: five cans a day.

Now, the thing about feeling so badly those couple of days is this: it’s incredibly scary. When I weighed myself after getting home from hospital, I was 92 pounds. When I weighed myself this past Saturday, I was 90 pounds. That is the completely wrong direction, and I was shocked at that, because I thought things were going better. Clearly, they were not, and as things progressed, obviously not good. Now that I’m back on the feeding train, when I weighed myself today, it said 94.5 pounds. I have more energy, I don’t feel like I’m so weak I can’t walk, and while this does not mean I’m going to be able to get out to the gardens and start the huge catchup work that needs to be done, it does mean I can take some laps around the inside of the house. Moving is one of the keys to recovery: if you decide to put it off until you “feel better” you’re not going to feel better. Get up. Move around. Don’t try to do 50 laps on the first go. The first couple of days, I could only do two laps through before I had to sit back down. Now I can do more, and also do things like get the dogs’ water bowl up, clean it, refill it, and get it back in place. It doesn’t sound like much to most people, and the previously active me would not think such a thing would be a big chore, but it is a victory for me in my current state.

The mental side: I had a bit of an existential crisis during the days I felt so incredibly weak and shaky, and wondered – for the very first time – if I was going to be able to make it back from this. Even with the first cancer diagnosis, I never thought for a minute that I would die. But at the beginning of this week, it was something weighing heavily on my mind: was it possible that things were too far gone for me to recover? I’d no thoughts of giving up and ending it all, so don’t worry about that, friends and readers (in fact, it never actually occurred to me for an instant). My mental state is not generally fragile, as people who know me would be able to confirm, but because of all the things going on and the very physical signs that are so very easy to see of the condition I’m in, for those couple of days I went to the edge of the abyss of wondering about the possibility of failure and very nearly fell in. To be honest, it scared the shit out of me. And during that little crisis, what I thought was the stupidest thing ever (at the time) bubbled to the top of my mind: I had grand plans for the gardens and bees this year, which are now out the window. I’ve no idea why that came to the forefront of my mind at that very moment. Perhaps it was because these things are important to me, and it was an attempt by my brain to help me recognize these are things I would want to fight for, and not to completely give in to the hopeless feeling that had flowed up to envelop me in its grasp. It still felt silly and stupid at the time, and I do recognize that this is going to be another lost season for the most part, but this acknowledgement is not a sledgehammer driving me into a depression, just a recognition that this is the way life happens sometimes.

So, where do we stand now? I’ve just finished another tube feed, and in a few hours, I’ll do another. It’s very much like being on a newborn baby’s schedule: wake up, eat, wait a bit, eat, wait a bit, eat, maybe nap here and there, and so on. If that’s what it takes to get the weight back on my frame and head back to the healthier me, then that oddball schedule is what I’ll do.

Remember, if you are someone going through cancer treatment, or dealing with the aftermath of it, or having issues thanks to radiation, the gift that keeps on giving pretty much forever, or just in general feeling that you’ve lost the point of it all somewhere: life is worth fighting for. There is, and only ever will be, one you, in the history of the universe. Find something that is special to you, the unique you, and hold to that as your anchor. The seas of adversity may be rough sometimes, but hold fast to your anchor and do not let the waves overtake you. You, and the people who love and care for you, will be better off for it.

A note for those thinking that nothing is worth it, and waving a flag of surrender is the only option to whatever problems have invaded your life, be they medical or other: please talk to someone before considering doing yourself any harm. The National Suicide Prevention Lifeline is available 24/7, at 1-800-273-8255 if your friends, family, or medical contacts are unavailable or if you want to talk to someone anonymously.

Until next time, peeps: be well.

No problem, Mr. “Network Engineer”

You know what experienced techs think when you feel the need to insert “I’ve been a (something – in this case a “network engineer”) for 25 years.” after you’ve described how you “solved” a problem in a manner that shows you don’t know jack shit about what you’ve just described? Let’s just say there’s a reason we have compresses for excessive eye rolling and why we put quotation marks around things like “network engineer” or “developer” or “IT guy” or whatever else it is you think is going to impress us. It isn’t. We certainly hope whoever is paying you isn’t paying you much. But if that’s what helps you sleep at night, go right on ahead and demonstrate your vastly superior knowledge while at the same time showing that it literally took you all day to “fix” the (non) issue. Well done.

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.