Being here is excruciating.
We're at the Sequim Cancer Center.
Every week day, Randy has radiation treatment to his throat. The inside of his mouth is sunburned, making it impossible for him to eat orally. As part of his radiation, he has a bite guard, and he's struggling to get it in his mouth. This morning's treatment took a little longer than usual. I don't know why: he didn't say; I didn't ask. He's had a rough morning.
The G Tube is in, but he's still nauseated and woke up the past two mornings vomiting. I think it's because he's not putting enough "food" in his tube. Really, we need to stop calling it "food." It's a shake. Not like a $5 milkshake, but a high-calorie, nutrient-dense shake. So more like a $10 milkshake. And corn syrup is the first ingredient after water. No, it's not Boost or Ensure; it's Fibersource HN brought to you by the good folks at Nestle' Health Science, which is the same company that makes Boost. So, remind me again why this $10 milkshake is better than me taking the food he normally eats and just throwing it in the Vitamix with a lot of water (or milk or chicken broth or bone broth) and putting it into his tube?
Two cases of these Fibersource HN shakes arrived via FedEx on Saturday. One of the home health nurses came by on Sunday, because, according to our insurance, who is covering the cost of the "food" at 100%, Randy needs to be supervised the first time he is "fed the food." In other words, we gotta jump through a hoop. Fine. It's not like I haven't accessed the tube; it's not like he's not "feeding" himself. I told him last week that I need him to feed himself, because, really, if the boys are left unsupervised for the hour it was taking Randy to pour what I was making into the tube, the house would fucking burn down. I left them alone for five minutes yesterday while they were eating, and somehow, the counter next to the sink, as well as most of the kitchen floor, and several large areas around the kitchen table were covered in water. COVERED. They even managed, somehow, to get food in the Lazy Susan cabinet. What the fuck? No rest for the weary.
The home visiting nurses have told him that it should take him about 10 minutes, and certainly no more than 20 minutes, to "feed himself" or, "pour your shake into your tube" as we are starting to say. "Feed himself" implies the man is going to eat by picking food up with his hands or a utensil and putting food in his mouth. My autism dictates that we call a spade a spade. So, the dude is pouring a shake in his tube. Be honest about it. It's not a "feeding" it's a "pouring." And we're moving on!
So, anyway, we're here. At the Cancer Center. He's getting fluids, and he's asleep. He needs to, I am sure of it. And I get it. Going through cancer is excruciating.
His schedule looks a little like this:
Monday 7:30 am radiation, 8:00 am fluids; typically done about 10:30, home by 11.
Tuesday 7:30 am radiation, 8:00 am radiation oncologist, 8:30 the nurses change the bandage on his PICC line and draw blood to send to the lab for prep for chemo tomorrow; typically done about 9, home by 9:30.
Wednesday 7:30 am radiation, 8:00 am medical oncologist, 8:30 am fluids and chemo; last week we rolled out of here about 1:30; home by 2 pm.
Thursday 7:30 am radiation, and that's it! Out by 8:00 am!
Friday 7:30 am radiation, 8:00 am fluids; typically done about 10:30 and home by 11.
The schedule is incredibly intense. They say it's one of the most intense forms of cancer treatment going. Of course it is.
Last week went pretty well, considering he had chemo on Wednesday, then he took a shower on Thursday, mostly by himself. It wasn't what I'd call "fun naked time" by any stretch of the means. The man has a one tube coming out of his body and another one coming out of his left arm. He's lost so much weight that he looks a little like a white Ethiopian child from the 80's. Live Aid anyone?
The problem, from my perspective, is that he's already got food issues (the man has an aversion to fruits and veggies; he tells me he can taste the chlorophyll in plants). So, when you take a person with limited food choices, and then whittle it down even further because he's going through cancer, and everything, according to him, tastes like shit...then he's not going to be able to eat orally. The G Tube helps, but he's got to put shakes in it every 2-1/2 to 3 hours. Three hours is pushing it. If he gets too empty, then the nausea starts again. And the dry heaves. And this morning he threw up because he was so nauseated.
And I get it. Because it's not like I haven't been there.
But the bottom line is, he's got to take control of this and stop letting it control him. He is the patient...
You've got to pour a shake in that fucking tube every two and a half hours. Set a timer, motherfucker, because I have to deal with boys, and I can't be keeping an eye on your shit. I got a whole bunch of other shit to deal with, including my own shit. So get your shit together. You have the ability. You have the drive, the inner motivation, to get through this. I know you do! I cannot do it for you. I can support you in many of the things you're going through, but I've been there and done that. You need to figure out...you need to force yourself...to get out of bed, to get up and be proactive as a patient, to participate in your food! Aren't we trying to teach that to Nathan? Jesus, we gotta spoonfeed him sometimes, and that motherfucker is 10! You've got to pour shakes in your tube, to take your meds, to set your timers as reminders for each of those things. Food is medicine, be it consumed orally or via the tube. And you need to do what you can to empower yourself to get through this.
I love you with all my heart. But GODDAMNIT, you need to get your ass in gear and start participating in your treatment. Stay ahead of the hunger and the pain and the anxiety. You did a really good job last week with it, especially the first few days after chemo, and I'm really proud of you for that!
The nurses and the doctors have told you, I've told you, your entire job is to live through this. It's not teaching. It's not worrying about your students. It's getting out of bed every hour. It's pouring a shake in your tube so you can sustain. It's TEMPORARY. And you need to use every fucking tool in your toolbox to get through each day. And if you're stoned all day long, who gives a shit? It's not like you're allowed to even drive anywhere! I'm carting your ass all over the Peninsula! And on Thursday, I'm taking the boys to the lake because the three of us need to get out there!
Get to it!
All my love always,
You know I'd give you everything I've got
For a little peace of mind
I'm so tired, I'm feeling so upset
Although I'm so tired I'll have another cigarette