Tag Archives: Cancer

To medicate or not to medicate, that is the question

For years, my blood pressure has been high every time I stepped foot into a doctor’s office or hospital. Not just a little high, but HIGH: anywhere from 150-170 over 100-130. The kind of readings that forever make the person taking my vitals ask me if I’m on blood pressure meds. “No,” I say. “Never have been, because my blood pressure is never high except when I come to see you.”

During the dark days of February this year, while I was in the hospital, my blood pressure sometimes rocketed up into the 180s (systolic – that’s the top number), at least once up to 200,  and the nurses would look at that, then look at me, ask me if I had a headache, dizziness,  or chest pain (no), and the doctors would order something to lower that to a better range ASAP. After all, on their charts, readings over 180 are in the emergency care bracket; i.e., the “is this person about to have a heart attack or stroke out on us?” range. While I was there, the med generally shot into my IV was hydralazine, which I found made me jumpy and anxious. So, on top of that, down went a xanax, to keep me calm. About an hour-ish later, they would take my blood pressure again, and the readings were anywhere from 110 to 130 (systolic), and that made them happy.

Fast forward to being discharged from the hospital, with two meds for blood pressure and an order to check in with my primary care physician. One was amlodipine, taken once and day, and the other was hydralazine, three times a day. My primary care doctor dropped the hydralazine and replaced it with a one per day lisinopril. I found my bp still bounced around, despite the meds, but a lot of times, when taking my bp, it was low. Very low: often the systolic was under 100 and the diastolic under 80. While this falls into the “normal” range, sometimes it was as low as 75/48 – far too low, and what it read Friday morning at 11:30, according to the record book I’m keeping.

Why does this matter? Because Friday afternoon, after feeling pretty good (although requiring a break that morning after 11:30, as I’d been out weeding), by Friday afternoon I was getting the hot/cold alternating feeling and a queasiness that told me I was in for a round of puking – or, in my case, dry heaving, which is what I mostly do. I had an orange just after 1 PM, and my bp was 94/57. Somewhere between 3 and 4 PM, when those alternating waves of hot/cold had started, the heaving began. It went on for over four hours. Ironically, when it began, I had just begun grinding up the anti-nausea meds I take, but had not managed to get down the tube. Once the heaving starts, it’s too late. So, for those hours, I sailed between contracting just about every muscle in my body as it tried to expel whatever it thought it needed to expel (but couldn’t) and napping in exhaustion briefly before the next round started.

The bad thing about all this is that the combined birthday party for the MonkeyBoy and the Soul Eating Baby was set for Saturday, and I was supposed to be smoking a couple of butt and making a batch of barbeque sauce. That, of course, absolutely did not happen, even though by Friday evening the waves of heaving had finally passed.

I finally managed to get the anti-nausea meds plus the other things I’m supposed to take down the tube, get some water in me, and basically slept on and off into Saturday morning. yesterday was much better, and today even more so, although I’d planned to climb into the bee suit today and do a quick, non-strenuous check of the hives. Tomorrow may be better for it.

I know you’re not supposed to do this, but I dropped the bp meds completely, beginning Saturday morning. I’ve found if I take my bp right when I wake up, it tends to be a bit high, but the rest of the time, it has been low: 99/67 this evening at 6 PM, before a tube feeding. Remember kids: it really isn’t advised to go off your meds without your doctor’s stamp of approval, and even though I did it in this instance (because I am the Captain) I do not recommend it.

So, things are a bit weird on ranch in the blood pressure arena, and there is going to have to be another chat with the doctor about this business, as this should not be something to have to worry about in addition to all the other things swirling around in this  current medical non-crisis-but-annoying-thing in March.

Also, fuck you, cancer, for making me so susceptible to aspiration pneumonia.

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.

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.

Focus

Things that happen out in the country, if you happen to live there: sometimes, your satellite ISP sucks. After sending a rather blistering note to them night before last, amazingly, things have been much better on the uplink side than they had been. Since everything for my actual work was taking so very long to get done during that little episode, I’ve missed a day on this. But I’m not going to beat myself up about it (“You can’t even keep posting for three days in a row, loser!”), I’m just going to accept that some things are beyond my control and rely on other people Getting Shit Done. Now that those other people have, I can move along here.

I also had a doctor visit yesterday – a new gastro doc, since my regular doc’s rather large practice and my insurance company are on the outs and have been for almost a year. Much as I love my doc, the fees for self-pay at a specialist’s office are incredible. That means setting up with a new one to deal with what has the classic symptoms of pancreatitis, with no one willing to actually say so. Which I suppose is fine: even if they’re not willing to make a 100% diagnosis on it, we’re still changing my diet anyway to help with the flareups – since I have no gallbladder, it just makes everything worse.

What that means, eating-wise, is lots of low-fat/no-fat foods, more vegetables, less dairy, way less caffeine (sniffle), and various meds for when the flareups hit. I had one in November that landed me in the ER, and another in December. For the latter, I just went back to my primary care doctor, who is a peach, and he gave me scrips for the same meds the ER doc did. While this whole thing is not something I can control 100%, I am taking the steps to minimize any instances, because I have to tell you, the pain is excruciating, the vomiting is copious, and it’s an all around nightmare. In my case, the vomiting meant dry heaves, and in that first round, I started heaving and could not stop until the ER folks got me hooked up to an IV with both fluids and some amtiemetics (read: stop puking/nausea meds). I would recommend, as I’ve done with this whole cancer business, that you avoid it if at all possible. I also managed to lost somewhere between 15 and 17 pounds in the past two months thanks to that. The doctors are frowning on that part, and I’m having trouble taking in enough calories in any given day – nothing new, but bad in this case – to keep the scale hovering between 100 and 103. It’s a work in progress.

To close this out for the day, and to end on a better note, there’s nothing like a dog to show you unfettered worship and love.

Until tomorrow, peeps: keep being awesome. Or, if you’re not awesome yet, keep working on it.

Where have you been??!!??

It was a long July and the first part of August has been as well. We’ve been rearranging servers t the NOC, trying to stay ahead of the weeds (and failing badly), and yesterday I had 15ml of fluid sucked out of my face under my right lower jaw because I have a huge lump there. It doesn’t sound like much, but that isn’t a very large area, and even 5ml would be a huge amount. Not nearly the same as the almost 2L I had aspirated from my right lung a few years ago, but just as painful even with some lidocaine. On the plus side, it was an ultrasound-guided aspiration, and I got to watch it on the screen, so that was pretty cool.  I can tell the fluid was adding some padding to the bulge, because now I’m left with hard lumps instead of kind of squishy ones. It will be back to the doc to see where to go from here. I’m really hoping to not have to have myself sliced up again, but if that’s how it goes, that’s how it goes.

In the meantime, I’m trying to tend my bees – a very small hive I was babying along vamoosed at some point in the past week – and with my sister’s help, trying to get the weeding done everywhere and plastic down to solarize the rows and not have to spend half my time yanking up weeds. For years now I’ve tried to come up with some kind of mulching system that is not hideously expensive, is easy both to maintain and plant through, and that would not cook the roots of the plants when we have three straight months of 100F weather. My thought is to pull back the top layer of soil in each row, maybe six inches or so, throw a layer of hay down, cover that back with the soil, put black plastic on top of that, and then a heavy layer of hay on top of that. The plastic should keep out the humongous numbers of weeds that don’t care what the weather is like, I can punch through plastic easily enough to plant/transplant, the under layer of hay will act as a water wick and retain moisture for the plants,  and the top layer of hay will keep the plastic from becoming an in-frame broiler and help retain the underlayer’s cool/moist combo. This is the theory, anyhow. I hope it works, as it would make life much easier around here.

I have five flats in the barn under the lights: primarily tomatoes and peppers – the peppers took a direct hit from pests while I was down with pneumonia over Memorial Day and they never recovered – some onions, leeks, and brassicas (broccoli, cauliflower). The latter will go under some shade cloth after I get that rigged. I’m also working on rigging shade barriers for the height of the season to go along the frames to help with the insane heat we’ve been having down here. A check of my weather station records, and the notes I’ve kept from before I had a weather station tells me each summer is getting hotter, longer, than the previous one. This year, we hit 100F before the end of May, and that has lasted right to this week, where we are averaging about 93F. The issue with such high heat for things like tomatoes is that we also have high humidity. This causes the pollen to clump, so the plants may grow, and often will also flower, but fruit set is poor, as pollination is more difficult in these conditions. Rigging some shade to take the brunt of the west/south sun may help that (at least I’m hoping it will – only testing will show if it does, so that’s what we’ll do).

My hiatus from social media is still on, and life is much better for it, I must say. I’ve also stopped going to various news-related web sites to avoid getting into time-sucking, useless commentaries with people I don’t know (and in many cases, wouldn’t care to). This has also been a good thing, and I’ve stuck to reviewing headlines at Google news and just zipping in to quickly read an article without getting drawn into commenting on anything.

Life at the ranch continues: the world spins, and we with it, doing the best we can with what we have.

Tuesday’s child is NOT full of grace

In the tech world, for some reason Tuesdays are generally the shittiest days. Problems are extra large, people are extra dense, ticket volume is extra high, and everything just seems to be a bigger pain in the ass than it usually is. Generally speaking, all my days are pretty much the same – to the point that sometimes I don’t even know what day it is – because I work every day, anywhere from 12 to 18 hours, doing something. So I take Tuesdays in stride, because often some other whack-a-mole will pop its head out on a day other than Tuesday, and to me,it seems like Tuesday even if Tuesday is just lending an outfit to another day.

However.

Today was my personal Tuesday. It started off very calmly. As Stacy astutely points out, that’s sometimes a warning indicator, i things are far too calm. Turns out, this was one of those times. Got my breakfast, got a shower, headed off to pick up a paper scrip from one of my docs because the med contains a scheduled drugs so cannot be called in – thanks a bunch, Feds, for making it annoying for those of us who actually need the stuff. It’s a 35 to 40 minute drive to that particular office, as it’s on the other side of the world from the ranch. Picked it up, got back in the car, and started my way toward Publix, to get the thing filled, plus pick up another that was ready, along with a few assorted other items.

On my way there, I get a call from the ranch: the electric company dude who reads the meter (they just drive up the driveway to the house and use their reader without getting out of the pickup, yay technology!) managed to back into and snap a stub that is a water line. To the house. Since Gabby was there with some worker bees, they shut off the main valve that leads to the house. Therefore, no water in the house or to any of the irrigation piping until it’s repaired.

Change of plans: we have no spare 1″ PVC lying around. Everything is the wrong size. We do have couplings, and they assure me we have pipe dope. Off to the big orange store. I pop in, pop out, hustle back to the car. In the parking lot, some guy gives me a shout, starts walking toward me with his hand out, like he wants to shake my hand and says, “Hey, how you doing?” and who obviously either wants to sell something, or get something. I say, “Sorry dude, in a hurry.” and I head back to the ranch, where…

…we do some test fitting, cutting down – with a mini coping saw, because the PVC cutter I had once upon a time I cannot find – test fit things, judge it good, and get ready to finalize it. No cement. Primer, yes. Cement, no. I dig around in various places, and in a drawer I come up with cement that a) I do not prefer and b) is old, so questionable. We try it anyway, allowing it to set, then turn on the water. Sealant: fail. Off I go once again to the big orange store, and since I’m already out again, to Publix to get the other stuff for the ranch.

The big orange store has all the things I need – including a ratcheted PV cutter – and I also spy some couplings that have rubber seals and teeth to grip the pipes when they’re inserted. No cleaning, priming, or cement required. I also find a combo cleaner, primer, cement in a handy spray bottle just like spray paint. Why did it take this long to come up with this? I pick up both, along with traditional blue dope, and head to Publix, where…

…as I’m giving the scrip to the tech along with my ID, and she’s reviewing it, she says, “Oh, no. They didn’t date the scrip. We can’t fill it.” Argh. I take the scrip back, pick up the other stuff, race back to the ranch, where….

…I redo the bottom fitting in the traditional way, but cannot get the top fitting off to redo the cement on that. Fine. I do the bottom, allow it to set, wipe off the excess, and then the valve to get the water flowing again to test it, only to find….

….the top seal is definitely not going to work. Fuck. I turn off the water, cut the pipe off at the ends of the couplings, which requires digging out the bottom part of the stub a bit, get the other part of the replacement PVC I didn’t use, and cut it down. Instead of dealing with the traditional prim/dope method, I slip the newer coupling on to one end and use my body weight to push the piece snug and it clicks into place. The other coupling goes on the top connecting pipe, and I cut down the replacement pipe a couple of times until I can get it to slide under the top coupling (after pushing that part slightly to an angle in order to do so. I push down with all my weight, but can’t get it to snap into place. I grab a rubber mallet and pound the damn thing until it gives a satisfying snap. Finally.

Time for a test! I open the valve, and the pump kicks on. The couplings hold and are not blown off by the pressure. There are also no leaks at the joints. Yay. I head inside, turn on some taps and the tub in the master bath to force the pump to cycle on and off to make sure any pressure changes don’t damage the joints. it doesn’t. Problem solved!

By now, I’m drenched in sweat and my pants are sliding further and further down my hips. I have a massive spasm going on my left side, from my hip all to the way to my face. I decide – it’s now 4PM, and I left the house about 11AM originally – it’s time for lunch. Except…

…it pops into my mind that the bees need to be fed. Luckily, I had already made their syrup this morning, so I poured the jars, climbed into my suit, went out, and changed their bottles. It’s very still, with no wind, and very humid, and I’m sweating even more in the suit than normal. I head back inside, peel out of the suit, and get lunch started, only to be hit….

….with a massive new spasm that takes my breath away. I lean against the counter to let the worst of it pass, then grind up my antispasm and other meds and finally get lunch made.

Then I find out Comcast is not willing to run access to our one road development: there are too many people on the loop they have at the road now, and they estimate it would cost them $250K to do our road. Fuck. The corporate guy suggests we call our local Comcast office and have them call in to corporate. Yeah.

So, thanks, Tuesday, for fulfilling every expectation I generally have of you. But you can go now, really. Seriously.

Running amok

As promised, a pic of the front gardens cucumbers, who are far outstripping their colleagues in the rear gardens. This is what happens when you get a raging case of pneumonia that knocks your schedule completely out of sync and keeps you from doing the rather mundane tasks like trellising work to keep pace with certain plants.

Cucumbers, front gardens, 2016

This is actually three rows of sown seed: the two middle rows are a couple of different varieties of cucumbers. The right row is green beans (variety: Provider, which is more reliable and productive than anything we’ve tried). This picture was taken a week or so ago, and does not adequately reflect the way the cukes are planning hostile takeovers of the frame to the left or the asparagus  in the background at this time. It’s something I’m going to try to address this weekend, and hopefully the pneumo, which has been with me for more than a week now instead of the more usual five days, will let me out of its grip.*

*Yes, I know, it’s strange to call pneumonia “the usual” in any way, but this is yet another of the ongoing gifts from cancers I should never have had. Fuck you, cancer.