Monday morning didn’t show any improvement in the status of my feeding tube. Absolutely nothing was getting in and I had woken up to a bloody mess on my abdomen. We called interventional radiation and told them I was coming in and needed to be seen again about my feeding tube.

As soon as I was brought into the exam room the nurse looked at the site, examined the area, and knew my pain levels were not normal. I had taken a picture of the aforementioned bloody mess just to make sure they knew I wasn’t exaggerating and this time the nurse called in the doctor. The doctor knew something was up beyond a normal tube failure and agreed that I needed to be put on some kind of narcotic and aside from a tube replacement, I’d need skin burned off because the skin from underneath the top layer was growing through the tube site and “granulating” which was causing a lot of the pain, discomfort, and discharge.

I was brought back into the IR procedure room and loaded up on fentanyl, but sadly not sedated because I was an emergency case and they didn’t have time to do a proper work-up. This was unfortunate for me because as previously mentioned elsewhere in this blog, I have an incredible tolerance/resistance to narcotics. The fentanyl didn’t make a dent in the pain that I felt when they removed the feeding tube, which involves shoving a wire down the tube, deflating the balloon in your stomach that holds it down, and pulling it out through a hole about the size of a .22 round. Once they had the tube out, they used some sort of silver based compound to chemically burn off the skin that was trying to grow outside my body, and fortunately the 400mg of fent blunted that just enough that I didn’t feel it until they were done.

Mind you I am awake and fully conscious. So I am white-knuckling bedsheets and have a fat roll of sheets in my mouth to bite down on because it was all I had. I was doing this medieval style. When they’d finished burning off the skin they had to re-sink another tube in and that felt horrible, especially as they inflated the new balloon. Pray you never have to experience this under these circumstances because it is just the worst.

It turns out, somehow (probably rapid weight loss induced) my balloon was working its way out of the hole, blocking it and resisting anything trying to work downward. As soon as the procedure was done and the immediate burning, pressure, and pain began to subside I asked for a test flush just to make sure everything was in working order. Right on the table they flushed the tube with some water and I didn’t feel any resistance, pressure, or pain- this was a game changer.

Once we got home, I began feeling instantly better in every conceivable way. I hooked up the feeding pump and got to work but it instantly began to cause a gastro-reflux and I quit in short order. I determined gravity feeding was the path forward at this point and I was correct. Gravity feeding not only wasn’t causing me any issues, but it was way quicker and less imprisoning than being figuratively chained to an IV pole for hours at a time.

This experience was also the kick in the ass I needed to just get on with progress, whether it was comfortable or not. My pain meds either aren’t effective, or I’m not taking them due to my team’s fear that they’ll trigger my nausea again and delay my recovery again. So I just started forcing myself to swallow. Now, I could always swallow throughout this ordeal, you have to not only keep the muscle function active to avoid atrophy, but because the saliva my body is making needs to go somewhere. What I mean in this case is swallowing water. I just started forcing myself to swallow water on Wednesday. First day, 800ml, not bad. Second day 1L, and every day after no less than 1L, in addition to my daily hydration appointments meant I was getting ⅔ of the water my oncologists believed I needed. I’m working toward that still but sooner than later I’ll start getting weaned off of the daily hydration until eventually I don’t need to go at all. That will probably spell the beginning of the end of my feeding tube and chest port, which would be a huge landmark in my recovery second only to a clear PET scan- whenever that might occur.

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On Tuesday, just after my tube was replaced, my mom’s husband arrived from their home in Florida. She’d not seen him since she left the second time in March although they spoke daily on the phone at this point. They slept in my room while I continued to live in my recliner; no real hardship as I was used to it at this point.

I’ve always gotten along very well with him, almost too well, as in the past I’ve been chastised for having a little too much fun with him and getting him into trouble whenever we got together back when I was significantly less sober than I have been these last few years. There’s absolutely no friction in our relationship and I’m thankful for that.  This also brought the opportunity forward for me to feel like an absolute outlaw. As they went out for lunch dates, I took the opportunity one day to take my second vehicle, an old minivan I inherited when my grandma died, out for a spin a few blocks away to Goodwill to get the kids some summer clothes.

As soon as they were out the door I flung a donation bag in the van and was off (this all happened at “old man waiting to die speed” as I don’t have the kind of stamina or coordination to literally scurry). I felt like an absolute pirate. I was sailing the open road for the first time in two months and it felt illegal. I dropped off the bag and went into the store and probably looked like a creep as I did something I’ve done 50 times before and walked the floor at Goodwill, but with a giant smile. The end result was me feeling completely exhausted. Just a few minutes of driving each way, what amounted to a 30 minute trip tops, completely wiped me out. A paragon of stamina, I am not.

It was about this time I started drinking shakes orally and easing myself into semi-solid foods, which is still a very loose term. More like “liquids that aren’t water or technically called a drink.” Apple sauce was achievable with sips of water after each spoonful, as was soup broth, but yogurt and ice cream are still not easy to consume and taste somewhat bitter depending on what else is in them. It’s worth mentioning I cannot taste anything still, but at least they are outside the norm. Most things that aren’t water I put in my mouth just taste chalky in consistency and that’s it.

Of course another benefit to having him here is that the kids get to see grandpa, which typically only happens once a year. My daughter was sick all weekend and bound to the couch, but my son was basically stapled to his hip in a way I’ve not see before. It was really something. “Where’s pop pop?” was the first thing he said as soon as he lost sight of him, and he tried to be not more than a few feet from him at all times.

I feel like in may ways this was the week I’d begun to turn the corner into real recovery. I hope this is the last entry that has a spicy story about some sort of setback.  Hope, however, is not a good planning factor.

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The views and opinions presented herein are those of the author and do not necessarily represent the views of the Department of Defense or the U.S. Army.