Hey, it's good to be back home again

TL;DR: Vic's kidney function returned to normal and we came home Friday.

Full story: Well, we made it through that.

After lots of fluids and antibiotics and tweaking medications, Vic's creatinine went down to 1.75 and he was deemed fit to be discharged.

As always the best part of Vic's hospital stay was this:

Georgie, the therapy dog. He visited twice. Because #dogsarethebestmedicine

It's still a long road. I would have liked to see him stay one more day to get a little stronger and to get a little more mentally "there." Without the tube, Vic really has to focus on his calories and his hydration—and he also has to get exercise to avoid a repeat of this week's pneumonia while staying oxygenated, which seems to have become a bigger problem than it was before.

Fortunately, we have a pretty awesome oncologist—he's so Zen. Now, if something is wrong, he'll make sure it gets addressed stat (I can use that word because of my extensive medical-TV-show-watching experience), but otherwise, he is the calming voice of reason. So while I was uncharacteristically panicking—"WHAT IF HE GOES HOME AND DOESN'T EAT ENOUGH OR DRINK ENOUGH OR EXERCISE OR WHATEVER????"—he's all, "Meh, what's the worst thing that can happen? He doesn't eat, he doesn't drink, he comes back here, and I order a feeding tube. Problem solved." It was such a "duh" moment for me. It's not like he'll die at home, because I'm there. If he goes south again, obviously I'll just take him back.

The oncologist then said all this to Vic, ending with "It's all up to you, buddy." He might not have said "buddy," but I think he wanted to. I think Vic understood what he was saying, but with his mental state, I'm just not sure. I asked him several times before we went home, "Do you understand what you need to do to stay home?" And he said yes, but when I asked him what he needed to do, he just didn't answer me. It's really maddening, but then I can't really be mad, because his brain isn't working right yet.

And deep in the recesses our our minds, there's still the nagging "Why didn't they give us the option of "wait and see"? Wait a few months for a PET scan and see whether there is still cancer there? Since there was no cancer in the tongue they removed, the PET scan would have been clear, and we could have avoided all of this. I know, I know—hindsight is 20/20, but we weren't even offered that option. Maybe there is a tiny cancer cell in the part of the tongue they removed, and maybe it would have grown while we were waiting, but it seems unlikely that in three months, it would have grown enough to require the removal of more than half the tongue.

We have been told that we're not supposed to think that way—it will drive us crazy. But it's hard. Dr. Song said he was committed to Vic's quality of life, but so far, it eludes him. And I know—it's only been two months. This is a year-long recovery. But it's hard.

OK, that's as dark as I want to go. You know I like to be the picture of positivity, strength and resilience. So as always, I'll leave you with something positive: a Bella video. I went home from the hospital for dinner on Thursday. Bella hadn't had a walk since Monday. I did not want to take her for a walk. It was cold. It had snowed that day. I had a cold. I was tired. But my step-sister-in-law had reminded me months ago that exercise is essential to maintain your well-being when all around you is crashing down, so I thought if I took a video of Bella getting ready to go on her walk and sent it to Vic, it would make me happier to do it. It did, and the walk was restorative. (Thanks, Amy.)

I've had a lot of people sending thoughts and prayers through the blog, texts, email and Facebook; offering to do things for me; reminding me to take care of myself; and putting those validating "likes" on my Facebook posts. I have a whole "gratitude" blog post coming, but until I have the energy to get it up, let me just say "thank you" here. I'm so lucky to have such a wide-ranging support group. 💗

Clickety-clickety-clickety-clickety, up the hill

I started this post on September 20. Things had been going well, and I had some exciting news to share, but I was busy, and I just didn't get around to it.

So how is it that, in the middle of my workday, I now have time to write a blog post?

Well, it's because I'm in the emergency room with Vic. Surprise! It sure was to me.

TL;DR: Vic is severely dehydrated and will be spending the night in the hospital. He should be fine, but we're still in the ER, so I can't say for sure.

Full story:

September 20, we had the second follow-up with the surgeon who created the new tongue and with the swallowing therapist. They said he looked great and were very pleased with his progress. They said that when he could go for three weeks 100% off the tube food with no weight loss, he could lose the feeding tube. Exciting news, right?

So naturally, Vic went cold turkey and stopped tube feeding that very day. He started eating everything he could find, and he did pretty good. I wouldn't say there was no weight loss, but it did hover around the same weight, going a little up and a little down.

The oncologist offered to write an order a few days later, but it was too soon, and Vic politely turned him down. Over the course of the first 10 days, he did really well off the tube. It took a lot of energy and a lot of time—it would take him an hour to eat what I could eat in 10 minutes—but he was committed.

However, the following Monday (September 30), he woke up in a lot of pain from the tube. That tube had always been kind of painful, but the pain had really intensified over the previous few days to where it was a constant 6 on the very scientific (not) pain scale. So he asked me if I could get the tube out. Because he had been doing so well, and the pain was so severe, I called the swallowing therapist to see if we could shave a week off the tube removal plan. When I didn't hear back from her by that afternoon, I called the oncologist. I knew he would write an order, and he did. We scheduled the tube removal for Thursday, October 3.

Here's where it starts to get interesting, but not the good kind of interesting where you want to keep watching a show on Netflix. More like when a doctor on a TV show is poring over a chart to see why a patient isn't recovering from a standard therapy and she finds something and says, "This is interesting."

Whenever you have a procedure, you have to fast before, right? But if you're trying to maintain your weight, fasting is a real problem. Also, when you have a bum ticker and are recovering from major surgery, little things can be very exhausting. So you get a procedure, go home, and go to bed. You don't have energy to eat much, so you just figure you'll double down the next day. That's what happened to Vic.

But the next day, he had a swallowing study, and although he had a small breakfast, he ended up having to fast the rest of the morning. Then we went to Aurora for the swallowing study—a very taxing trip. Go home, go to bed, eat very little. That night, he also started coughing. He thought he might be getting a cold. Great.

At this point, I need to remind you that, when one little thing happens to Vic, it tends to snowball exponentially. So hold on to your seat—we're about to have an avalanche.

Saturday morning, he realizes he doesn't have a cold, but now he has coughed so hard that he has hurt his back. So he cancels on our lunch plans and stays in bed most of the day. Day 3 of very little food, very little water. I flashed back to our 2011 cancer journey when he started losing weight and kept promising he wouldn't go below 160 pounds but then he went below 160 pounds and didn't care and I had to yell at him and it was the only thing we ever fought about and eventually almost caused our divorce. (Sorry for the long sentence, editor friends.) I may have yelled. He may have pouted. I may have said "That pout won't work on me, mister." He may have said, "Don't yell at me." I may have said, "Then eat something." He may have said, "I'm trying!" I may have said ... well, you can imagine how the rest of the conversation went.

Sunday: Repeat Saturday, minus the yelling. Vic decided he should go to the doctor Monday.

Monday: We went to the doctor. Although he was weak, he was able to get to the car, walk into the office, sit there and talk to the nurse, get back to the car and get home. (This will become an important detail for my "Tuesday" paragraph.) Verdict: All that coughing may have caused a dislocated or cracked rib. We got a prescription for a muscle relaxant and a pain reliever and a stern admonishment to eat more. "Two Boosts a day—at least—along with your regular food." I figured with a doctor's order to eat, I would be able to convince him to eat more, but I was wrong.

We got home and he took his afternoon pill and the bare minimum of food to get them down and then he was so tired, he went to bed. Said he wanted me to wake him up at 2. This should have been my first signal that his brain was entering an altered state, but I can be obtuse. I thought he meant 2 a.m and was joking, but I now think he meant 2 p.m. for his afternoon pills--which he had just taken. I said "How about 6?"—a normal dinner time. "How about 10?" he said. "How about 6?" I said. But he rolled his eyes, like, "Why do you ask me when *I* want to get up if you're just going to make me get up when *you* want me to get up?" So I let it go, got him up at 10 to take his bedtime meds. Again, he barely ate anything, regardless of my cajoling, and I decided, "Tuesday, Nurse Ratched comes out. Food *will* be eaten. Water will be drunk."

I set my alarm on a work-at-home day for 5 a.m. THAT'S WORK-IN-DENVER TIME, PEOPLE!!! I got him up and got him downstairs to take his pills—one set without food at 5:15 (I think we finally got those down around 5:45) and one set with food at 6 (I think we finally got those down at 7:15). He would eat one spoon of yogurt and just be tuckered out. I was trying to get him to finish that yogurt as well as a bottle of Boost, but literally all he could do was the yogurt and one-third of a bottle of Boost. I figured I'd get him up every three hours and just give him as much Boost as I could.

Three hours later, I went to get him up, and he was just out of it. Couldn't really answer questions—he could start, but he couldn't finish. Couldn't stand up. Couldn't really understand what I was asking. I still thought I could will him to get up and eat, but it quickly became apparent that I was out of my league. Fortunately, my sister-in-law and brother-in-law were here planting a garden for us (I know—awesome, right?). My BIL helped Vic get dressed, and then he and I got Vic to the stairs, where he scooted down step by step on his butt. It took all three of us to get him in the car, and away we went!

Long story short (hahahaha), he is severely dehydrated. So much so that his creatinine (which you may remember from a previous blog post had gotten alarmingly high at 2.5 and is an indicator of kidney function) was four point OMG (seriously, I stopped listening after "four point," so I'm not sure  what it was). Kidney function was at 20 percent. Winner winner chicken dinner, you get a hospital stay!

So now, many hours have passed since I started this, and we are firmly ensconced in a hospital room watching Best in Show. Sounds like we're going to be here for a few days, so, yay!

BUT THE GOOD NEWS IS (because who would I be if I didn't look on the bright side?), he is where he needs to be. He's already responding to the fluids and is stronger and more cognizant than he was only seven hours ago.

So I'm going to sign off for now, but a blog post isn't complete without some pictures, so without further ado...

A normal Vic meal before the snowball/avalanche

Vic at physical therapy getting measured to
determine his progress.

And this is Vic showing you all how he can talk.

Yes, we had some helium balloons in the house.

"And that's all the news from Lake Wobegon, where all the women are strong, all the men are good-looking, and all the children are above average."