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.

One thought on “Life is complicated”

  1. Thanks for sharing all this.

    Articulately written, from the heart (and brain). Close to my heart and no doubt to other readers.

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