Tags
cancer, eating, Gene Simmons, head/neck cancer, nutrition, oral cancer, radical neck disection, surgery, surviving, survivor, survivorship, swallowing, tongue flap, ZZ Top
(ZZ Top reference)
I must admit that even after two and a half years (and more) I have problems eating. I can eat a number of things, and do. But there are some things, a lot of things, that I have problems with. Naturally, I am not interested in the things I can eat. I am interested, extremely interested, in the things I cannot eat.
And so, while 30 years ago (okay, 40 years ago, maybe 45) the idea that I might survive on a diet of various ice creams and various toppings would have seemed like heaven, the case now is that commercials about hamburgers and steak are my personal pornography.
When they did their surgical thing to my tongue, as I think I’ve mentioned before, I did not get a transplant of Gene Simmons’ tongue (and I am frankly glad of that, for reasons we will not get into here). It is hard to reach the roof of my mouth with my tongue, and it is hard to toss food particles around from side to side as most people do without even realizing what they are doing.
No.
In my case, if things get lost on the right side of my interior culinary disposal unit(I just made up a euphemism, didn’t I? If you hear or see this anywhere other than here, please advise me so that I can sue the people who ripped me off) I lose them. And if they go up to the top, to the roof, ain’t no way. I have avoided breads as a result. There is something about bread. I have discovered quite by accident that the roof of the mouth is a magnet for bread. I have decided to call it the Soccerfreaks Effect, and some day kids will be reading about it, and me, in their science classes. Or, perhaps, in those health classes where they learn about the five types of food…or is it four…or nine? I am not up to date on that. Back then we had …. well, if you are young, you don’t want to know…and if you are old, you already know. Test a week from today.
Food groups. That is what we are talking about here.
One of them sticks to the roof of my mouth whenever I try to ingest it. They did not teach me THAT in grade school, I assure. Had they done so, there is at least a marginal chance that I would have avoided the surgery to my tongue and opted for a happy life of eating well until the day that the cancer consumed me.
Irony there: I would consume until I was consumed. Just for you folks who do not detect irony immediately, and I know you are out there.
There are other issues. Of course. If I eat a salad, that baby had better be really sliced and diced. The fun thing with that is that I can use any number of dressings on it, as long as they facilitate the ‘sliding down the throat’ effect, and each time, it is a different meal!
And there are potatoes. It doesn’t matter what you do to potatoes (am I pulling a Dan Quayle here and misspelling potatoes? Because if I am, I don’t care. He had way more help than I have, Google notwithstanding.) The thing about potatoes is that they are always soft on the inside, even when your wife bakes them to a crisp; even when your son fries them to brittleness. There is softness in there somewhere, and, besides, the crispy effect is beneficial, after all. If you are a head and neck cancer survivor, you should find eventually that you LIKE crisp potatoes and crisp chips and that sort of thing, because you can feel them! And if that doesn’t float your boat, there is this: you can add almost any legitimate vegetable to mashed potatoes, mix it in, and the mashies will help it slide down, as long as you are not trying to take down an entire asparagus spear at a single swallow.
Potatoes are good. I like the soups, actually. You can put anything you want in them, given certain limiting parameters regarding spices and chunks of liver and flava beans, and get it down, if you work at it. Most of you. Most of us.
And there is yogurt. Even a 100-year old Russian woman with no teeth can get yogurt down, at least according to the commercials from back in the day, and how do you think she got to be a 100 years old, anyway?
But you don’t need advice. I get carried away, as you know.
This is about an event.
You see, I have been trying to eat more, ever since the beginning. When I read (here!) that others are eating better than I am I get sort of frustrated about that and I have to learn more about their conditions and then I develop rationalizations for why they can do something I cannot do. Sometimes it is because they have, oh, I don’t know, a tongue!
Okay, that is the main one :).
Sometimes I wonder if having the tongue surgery was a good idea. Have I mentioned that? We tend to have doubts about some of the things we do after the fact, in general, I mean, and of course, specifically when it comes to our cancer treatment, especially those of us who trust our doctors blindly and irrationally and just say “Go for it, dude!”
That’s sort of what I did.
I still trust that I made the right decision, more accurately, that THEY made the right decision, but I have begun to waffle a bit. I admit it.
It goes like this: If you could eat normally for five more years and then die, as opposed to all of this, would you? Well, he** yeah!. Well, he** no!
And on we go. It goes both ways, as some of you, maybe most of you, know. Some days you feel like a nut; some days you don’t :).
I am not sure which is which, decision-wise, but in the end, I am glad to be here.
So we can leave that for the moment and get to this: my wife lives with me (I know, I am amazed as well!) as does my son (again, I can only express sincere astonishment). We no longer have family meals, since our schedules vary so much and, especially, because I am not going to be eating with them anyway, normally. We have big meals for holidays, and I skip those, or attend briefly, just enough to hypocritically bless the meal and take a bite or two and leave before they become absolutely omnivorously cantankerous over their plates, and that’s about it.
When my wife or son comes into the den with a plate of this or that, I have this apparently annoying habit of going to them and sniffing their food.
I am not being territorial, trust me :).
Food smells so frigging good that I HAVE to see it, and smell it, and ask them what is in it. I am wondering if there is some possibility that I might be able to EAT it. And usually, almost always, I am disappointed.
Spicy is out. Almost all meat is out: chicken and pork are too dry, beef is too chewy. Um…that IS all of the food groups, is it not?
Oh, and breads and bread-like products: crackers, buns, pretzels, chips, nips, Cheezits, whatever…out.
So, no nachos. No chili. No burgers. No perogis (sp?). Not much of anything.
I am not feeling sorry for myself, trust me. But today, my family, that is, my wife and my son, eventually told me that my sniffing their food was really gross. This happened because I asked my son if I could take a bite of his personal concoction, a chicken sandwich consisting of chicken (who’d have guessed?), mayo, melted cheese, and bbq sauce ON A BUN.
In the past, he has been reticent, okay, defiant, in not permitting such an act. I figured that he really thought, and I’m serious here, folks, that he might somehow get cancer if he ate food after I took a chunk out of it. Really.
This time, he said “Go for it.” I said, I mean, I want to take a bite out of the SANDWICH??? And he said, ‘Yeah, do whatcha gotta do.”
My boy is growing up.
He had compressed the sandwich. You know? I mean, he had squeezed the bun parts together pretty tightly, and this was the only way I had a chance. My jaws don’t separate too well. They have a name for it and it begins with a T, but I’m beyond that, long beyond that. Still, the compression made this at least possible.
I’d already had a morsel of the chicken, found it dry as usual, but somehow processed a bit, easier to get down, so I had some hope. And even if I failed, there would always be Paris.
I mean, there would always be the TASTE, even if I had to regurgitate it (cancer can be gross, folks, definitely not for the light-hearted).
Let me elaborate now, before I forget: after all was said and done, and my son was gone, I said to my wife that only in the last couple of weeks has Ry been allowing me to try his food, and she said, THEN, that, well, they both find it gross that I stick my nose in their food, and they would rather have my spit in it that my boogers, and I am not making that up.
Of course she disappoints me, but she is my wife. What am I going to do?
I took as large a bite as I could of the chicken sandwich a la Ry, and managed to pull off about the same amount as a two-month old, but it was bread AND chicken AND bbq sauce AND mayo: it was a COMBO. And I got it all down.
I am not dancing naked on the roof of my house because I did that, of course. I am dancing on the roof of my house because I CAN.
But you get the idea. It was a big moment for me. I see big things in my future. I may run for president. Or even try out for American Idol. As ZZ Top sings…’I’m nationwide’.
I used to rant like this only after really good sex. What have I become? 🙂