(Steely Dan reference)
When I was operated on for head and neck cancer, back in October of 2005, they replaced half of my tongue, performed a radical neck dissection, and put a PEG tube into my torso.
The surgery I have described. Maybe I didn’t point out that they opened half of my lower face and that my teeth have never quite matched up since they put me back together. Maybe I have not mentioned that speech has been a problem, one that comes and goes, depending on the moisture levels in my mouth. I am certain, or nearly so, that I have talked about the problems with eating.
It seems that replacing half of my tongue was one of those great ideas in principle that doesn’t necessarily work out in practice. That is a work in progress. I eat. I eat salads that are diced finely and covered fairly well with dressing so that the dressing helps the tomatoes and onions and lettuce and such slide on down the gullet. I can out-eat you in the ice cream department. I enjoy experimenting with my condiments to make the ice cream seem new and exciting, but, to be honest, this bores me eventually. I eat yogurt. I eat pudding. All of this is rather bland when the people around you are sampling steak and shrimp and lobster and hamburgers fresh off the grill.
Some have asked me about pureeing stuff. Maybe I spelled that wrong. I mean to say, they mean to say, blending good stuff, mixing into a pudding in its own right and then eating it. Sort of like mashed potatoes with other stuff mixed in, which is how I actually started eating real food by the way.
I am sort of stubborn. I want to eat food the way I used to eat food, and am afraid that if I bend to the blender, I will accept it and live with it. I will not disagree with anyone who states that I am stupid in this regard.
But I have not given in, much to the chagrin of many, including my wife and, I am sure, a doctor or two. I have lost some weight over time (I needed to lose some weight, but not this much weight). But I am still either eating the way other people do or I am pouring my meals into a beaker and then pouring it into a funnel-type thing called a syringe which is planted in the PEG tube that goes into my stomach.
It is not as gross as it sounds. Or maybe it is and I have just grown used to it. The tube is under my shirt, of course, and I try to flatten it out so that people do not notice it. I do not attempt to eat with the tube in public, as I would consider this an affront to other diners, of course. I use it in my house, even when we have guests, but not in the dining room. I slink off to the den, turn on the TV or some music or both, and go for it while they are in the dining room eating.
There is some care involved with this. Before I go on, don’t get me wrong: one of the amazing things to me is that ALL cancer survivors have some things, some ideosyncrasies, they have to deal with, that the rest of the world never knows about, not even, perhaps, other survivors. I am not crying the blues. And I know that I am not alone. Anyone that has had cancer has some sort of interesting (for want of a better word) additional tasks to deal with after surviving.
I use the word ‘interesting’, I guess, because I find this most intriguing. People read about the chemotherapy and the radiation and the surgery and the prosthetics, and major sorts of issues like that, but they don’t read about, they don’t hear about, the little things that annoy us daily, that take up our time, that make us dependent, perhaps, on someone else, or slow us down, or cause us minor pain, or embarrass us, or make us frustrated, or make us angry with ourselves or with our world.
I cannot speak for the entire cancer survivorship. I know head and neck cancer, as it relates to me, and I know about lobectomies, as they relate to me, and I know how they affect me, in the large ways and in the small ways.
I have a PEG tube.
There are some issues surrounding a PEG tube that people are not aware of. For one, it is a tube of about a foot or so long, at least on the outside, implanted into your stomach through a hole, a wound, in what appears to me to be your chest, although my wife argues that it is not, and she knows better than me. Trust me on this: it looks like it is hanging out of my chest. This means that there is a wound, and that the wound must be cared for.
In my case, I have had the PEG tube for almost three years. To care for that wound, the hole in which the tube resides, I must care for it constantly. One of those minor annoyances. This means daily splashes of hydrogen peroxide, which is no big deal, and it means dressing changes, also no big deal.
It means that once a month my wife (in my case, because she is a wound care nurse) is burning off the flesh, the raw meat, that insists on pushing itself out of the wound. This hurts, but only modestly. Okay, it hurts. There are these Q-tip-like swabs she uses, only they are at least twice as large and the cotton ends are replaced by what look like corn dogs. Except that this end is the business end, of course, and it is silver nitrate or sulfer nitrate or some thing the Devil himself would have invented if he thought it would do no good for the world, and she rolls that around the wound area, and my flesh, the new meat, turns to ash, literally.
It hurts. But just a tad. And then I am good for awhile.
I still have to tend to it daily, and I still have to change the dressing (speaking of annoyances that others never know about) but that is cool.
I have to flush the tube after ‘eating’, which I do not do after each ‘feeding’ as I should. In fact, the tube gets clogged, and I know enough to use the plunger with about half of the syringe filled, pushing it down to force the Jevity down and into my stomach, and then shutting off the shuttlecock and pulling the plunger out to a very loud, shotgun-loud pop. This may be why my tubes do not stay in longer than they do, I have been told very recently.
Still, the PEG tube hangs in there. It does. I have had one for nearly three years, and only today had it replaced for the second time. That is probably better than you get from most athletes’ lifetime contracts these days.
The first time it happened, the losing of the tube, that is, I woke up in the morning, went out to the kitchen, got my two beakers of Jevity prepared (I mix each with water to help them go down without a plunger, for you fellow head/neck cancer survivors) and only as I reached for the tube to stick the syringe in (it’s really more like a funnel although it looks like a huge plastic syringe) did I realize that there was no PEG tube to grab.
I went to my bedroom first, for whatever reason, and there it was, lying on the floor. The problems with that are, or were, twofold. One, I was without my tube, obviously. Two, my tube was on the floor and likely no longer fit for insertion into my stomach. For all I knew, my dog had been eating it. Third (I never did learn to enumerate correctly) I had to keep that hole open until I got to a doctor, or they would have to create a new hole. I don’t know about you, but I feel that I was born with the perfect amount of holes (okay, the PEG tube hole is the exceptional addition) and I did not want any more holes in my body. I do not have earrings, I do not have…okay, let’s leave it at that. I like the holes I already have just fine and consider the purposeful creation of new ones to be primitive.
Primitive is alright. I am not being judgmental. I just want to seem like someone who has evolved. That’s all.
And I definitely didn’t want someone, regardless of expertise, drilling a new hole in my chest/abdomen (depending on who you talk to, and I would trust my wife on this one since she has been proving me wrong time and again lately (okay, can I sleep in the bedroom now?)). So I went to the ER at the BIG hospital, which is probably a bad idea, but that is where my wife works and where I trust the staff with completeness. On the other hand, being the big hospital, they tend to get the major accident victims from all hours of the night, the gunshot victims, the knifing victims, the domestic violence victims, the domestic accident victims, you know, everybody and their brother. They are busy.
A guy with a PEG tube that has fallen out tends to be pretty low on the triage pole (triage being, as I understand it, if they are dying, forget ’em, if they are dying but can be saved, they go first, if they are hurting really bad, and may bleed to death, move them up the list, if they are kids with injury, move them up too, if they are kids crying, move them up behind kids with serious injuries, if they complain a lot, regardless of age, they go next, and everyone else goes ahead of the twerp with the PEG tube out).
This is completely understandable.
Unless you are me.
To be completely forthright, they put me in a room pretty quickly, which pleased me, making me think that knowing my wife was paying dividends. Three hours later, I was beginning to have my doubts. It is one thing to MAKE it to a room (once you have paid), and quite another to get some medical attention. Some of you will think I am a jerk, if you do not already, when I say that I finally got dressed (in case you are wondering, I was dressed when I got there, too, and they insisted that I get undressed and put on the usual gown) and walked out to the front desk and told them I wanted my money back (co-pay).
They got really excited then. The policeman that sits out there started to nervously twitch at the strap on his holster (I wasn’t yelling or anything, I was just different, and policemen tend to find this threatening, I think). This was more than a year ago. I remind you, in case you have forgotten, that I was trying to get a new tube in place before the wound, the opening, of the old one, closed up completely, requiring new surgery.
When I demanded my money back, a guy magically appeared saying I was next on his list and he acted like a doctor. I should have known by the short jacket that he was a student or something, a lamb sent to the slaughter (I would have held him in front of me if the policeman had drawn and fired). I was assuaged and went back to the room and waited some more.
This was all a very bad idea on my part, because the doc showed up soon and was very um, agitated with me. She had LambBoy get a tube that in no way resembled my previous one, even though I had it with me, and she insisted she would have to make a new hole, until I literally poked my finger into my chest (abdomen, depending on who you are talking to, and I would go with my wife’s view if I were you (can I sleep in the bedroom NOW?)) and told her and showed her where it was.
So, they stuck the new tube in and were done with me.
Whereas my old tried and true was white and had lots of nice features like a shuttlecock and a bumper, this was a drab olive sort of snake that must have been at least a foot longer than my old one, if not more. It actually hung down beyond my crotch and gave me PEG tube envy. But I was cool with that. What did I know? They get the big bucks.