This roller coaster called life

We love roller coasters. We've been on virtually every roller coaster in the world.  We've been on more roller coasters than just about anyone.  We've been on 112 roller coasters.  We've been on a few roller coasters. Can you just work with me here?

The nice thing about a roller coaster at an amusement park is that it doesn't last forever. You go up, you go down, you go around, maybe you go upside down a few times, and then it's over. If you had a good time, you go again. (I'm talking about you, Zambezi Zinger at Worlds of Fun in Kansas City.) If you didn't, you don't. (I'm talking about you, Cyclone on Coney Island. You are too old and rickety and you practically gave me whiplash. Once is enough.)

But the roller coaster we're on now seems never ending. It's like you go up and up and up, and just when you think you're going down the big hill, you take a tiny dip and it's back to up.

It started in the hospital. Everything was going great; he was ahead of the curve in all recovery areas. We're cresting the top, putting our hands up, getting ready to scream, and BOOM! Pneumonia. BOOM! Defibrillator goes off. Three extra days in the hospital. Clickety-clickety-clickety-clickety. Back up the hill.

We get home, everything's going OK, but no one has delivered the oxygen he needs. We spend five-plus hours on the phone and Vic's sister goes to the oxygen place in person and still have to wait the weekend to get it delivered. Clickety-clickety-clickety-clickety. Up the hill.

The next week, it's the same story with the tube food. (He has to take all his nourishment through a feeding tube in his belly.) We hadn't signed a form we needed to sign with our first shipment, so I couldn't order more tube food. By the time we got that snafu worked out, it was Thursday. Truck goes out Friday, no deliveries on the weekend. Clickety-clickety-clickety-clickety. Up the hill.

Then there are the levels. We go to the oncologist (he's doing Vic's follow-up care, even though he doesn't need chemo or radiation). They take blood. We go home. Two days later, urgent call at 8 a.m. His potassium level is high. (Potassium is important for maintaining a normal heart rhythm, among other things.) His creatitine level is high. (Elevated creatitnine levels can signify impaired kidney function. This is important because—say it with me—he only has just the one kidney.) Can we come in for fluids? So we head to the oncologist for fluids, which you get via IV in the chemo room. THE CHEMO ROOM! Who wants to go back there??? (That said, it did give us a chance to break out the power quilt our friend Cara made for his first round of chemo.)

He gets more bloodwork the next week. Two days later ... yeah, potassium is higher, creatinine is higher, BUN is high. (BUN is another indicator of kidney function.) Can you come in for fluids again? And see your nephrologist (kidney guy). Clickety-clickety-clickety-clickety. Up the hill.

Then last Friday night, while I was changing his dressing, I noticed his arm wound looked funky. It was late, so I texted the home health nurse the next morning. She agreed. "Oh, I don't like the look of that," she said. "Can you go to urgent care?" We had been looking forward to a quiet Saturday with no doctors, and BOOM! Infection. Clickety-clickety-clickety-clickety. Up the hill.

And don't get me started about the daily schedule. OK, get me started. His day starts at 5:15 a.m. and goes until 10 p.m. In between, he needs to take five cartons of a high-calorie liquid plus two cartons of a high-protein drink; he needs to take all his meds, which must all be crushed and taken at very specific times; he needs to do his swallowing therapy; he needs to do his home exercises for physical therapy; and he needs to go to many and sundry medical appointments. You may notice that no time has been built in for, say, recreation, petting the dog, paying the bills, etc. Clickety-clickety-clickety-clickety. Up the hill.

So even though physically, he is healing quite well from the surgery, emotionally, he's struggling. First of all, that schedule. Oy. It just feels like all he is doing is feeding and taking meds. Getting a little swallowing therapy in there is like moving mountains. Physical therapy, moving planets. Second of all, all these little things that are going wrong. Oy. He feels like he is circling the drain. And of course, his heart is still his heart, meaning that it still doesn't work very well, and with everything else going on, it's really unhappy with him. When he does have free time, he just wants to sleep. Which leads me to nighttime. That ungodly time when, if you've slept too much time during the day, the demons come. He's hypersensitive to noises and every little thing on his body. (My head itches. Now my arm itches. My neck hurts.) So he's getting no sleep. Lather, rinse, repeat. No, wait, that is mixing metaphors. Clickety-clickety-clickety-clickety. Up the hill.

And yet ...

... most important, the cancer is gone. Repeat: The. Cancer. Is. Gone. He will get a follow-up PET scan in November, but there was no residual cancer in the tongue part that they took out, and there was nothing in the lymph nodes they removed.

... he is getting better. His tongue is healing perfectly, if slowly. (It'll take about a year for it to shrink back to a normal size.) The hole where the trach tube was is almost closed. Other than being infected, the arm wound is healing quite well. The leg wounds (where they took the skin for the arm graft) are almost gone. He is ahead of schedule on his speech. It's a little slurred, but it's understandable—and it sounds like him. Even his pesky platelets have improved—300 last time they were measured.

... his levels are going down, what with the fluids and the extra water Nurse Ratched is making him drink.

... he still has his sense of humor. Here's the shirt he bought to wear to follow-up visits with the surgeons:

Hint: It's not about the chameleon. It's about
the chameleon's super tongue!

... he is eating Cheetos. CHEETOS, PEOPLE! (Also, rice crackers, graham crackers, thinned yogurt and thickened apple juice.)

... his speech therapist loves him. She was making him do a lot of work at his visit last week, and he joked, "You hate me." And she said, "I love you! I love you because you step up. People have thrown a lot at you, but you don't give up." Then she called him a sissy for using the walker, and he ditched that.

NOTE: She did not actually call him a sissy, but he said, "It was in her attitude," and today she confirmed that that is what she intended. She is awesome.

... his physical therapist took a shine to him, calling him a goofball within the first 30 minutes of meeting him.

I mean, he is kind of a goofball.

... he has started trying to do a little more. He's posted a few pictures on Facebook, including this one of a recent hummingbird visitor.

Today, we overheard a man say that something went wrong with his surgery, and he was going to have to wear a trach tube for the rest of whatever, and Vic recognized that there are worse things than what he's going through.

What's that sound? Oh, yeah. It's the downhill part of the roller coaster. Wheeeeee!