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."

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!

F.U., aardvark; the eagle has landed

After a final walk to our "Denver" room ...

This room was the goal for every walk—you can see downtown, the
 entire Front Range and Pikes Peak! Don't complain about the quality
of the photo. I used my phone, and I'm not a photographer.

... and a lot of waiting ...

Balloons from little sister Alice

... we finally made it home.

(Thanks to our brother-in-law Ed for bringing Bella home while we were waiting to be discharged!)

And as has been the case for so many of these blog posts, Vic is sleeping soundly.

Couldn't be happier to be home. Couldn't ask for better family and friends who have supported us on this journey.

Postsurgery, days 10 and 11

TL;DR: WE'RE GOING HOME!!!

Full story:

Day 10 was more or less uneventful. Let's ignore it.

Day 11 started like any other: the ENT team descending upon us to do their work and leave, like ghosts. We chatted a little about the trach tube coming out, but they are so busy in the mornings that I don't really like to bother them. I knew we had to be in the hospital until at least 7 p.m., and I didn't think they'd discharge him in the evening, so I didn't need to take up a lot of their time.

That said, last night I'd started thinking about all the things we'd need when he went home: supplies, tube food, home healthcare, portable oxygen, etc. So when one of our favorite nurses showed up for shift this morning, I started quizzing her. She sprang into action and started calling people and requesting things and finding things out. Next thing I know, people are calling me to set things up, one of the doctors from the ENT team came up and took out the rest of his staples and his trach tube, respiratory was here to do an oxygen test, the speech and swallowing therapist was here giving him lessons—when it's time for discharge, things move at the speed of light.

(That said, on discharge day, things usually move at a glacial pace.)

So I'm just finishing up my workday, Vic is watching a movie, and we are counting down the hours.

Aardvarks, STAY AWAY!

Image by OpenClipart-Vectors from Pixabay.

Postsurgery, days 8 and 9

TL;DR: Another wild couple of days, but back on the recovery train. Toot toot!

Full story:

When last we met, Vic was sleeping soundly and all was right with the world. (Well, right considering everything he's been through.)

Imagine my surprise—and dismay—when at 6:30 a.m. Friday I was rudely awakened by virtually every medical professional on the floor rushing into Vic's room. I gave him his white board, and he wrote "shook." "Shook?" one of the doctors said. "Are you shaken? Are you cold?" But I'm fluent in Vic, and I said, "His defibrillator went off." (It shocked him. That's pretty close to "shook.")

This made everyone even more panicky—everyone but us. We had more of a "been there, done that" attitude. I mean, his heart goes into ventricular tachycardia, his defibrillator goes off, and life goes on. The device did its job.

But since that's not their everyday life, I'm glad I was in the room, because I was able to answer all their questions about how often the defibrillator goes off, what kind of defibrillator it was, what his heart conditions are, what medications he takes for them, etc. Slowly but surely, they decided it was OK to leave him. I mean, they all had to go to their surgeries and whatnot. A couple of cardiologists came down, they did a bunch of heart tests (interrogating his device, giving him an echocardiogram, giving him another chest x-ray, doing an EKG), and I answered the same questions again. Later in the day, after talking to Vic's regular heart doctor, they decided to start him on a new heart drug.

While medically, the shock didn't have much of an effect (other than definitely delaying the discharge date), psychologically, it threw him into a tailspin. He basically spent the whole day in bed when he wasn't walking or going to the bathroom. I'm sure he wasn't feeling great from the pneumonia, but he also gets pretty melancholy when his defibrillator goes off.

So all in all, it was a pretty subdued day. He did get all four walks in, but the last one was so slow, and he was so weak. It made me so sad to see him so down in the dumps.

So imagine my surprise—and delight—when at 5:30 a.m. Saturday I was awakened when I saw the CNA taking him to the bathroom—and he was walking regularly. Not only that, but he walked from the bathroom to the bed without assistance as if he hadn't had pneumonia or surgery or a shock at all! It was early, so we went back to sleep, but at 6:30, when the ENT team was here, he just seemed better. More jokey. More ... Vic. He even did a little jig on a walk he took later in the day!

I don't know whether he was just feeling that much better from the pneumonia (I mean, if you're going to get pneumonia, do it in the hospital where they can give you massive amounts of powerful antibiotics so you can get over it quickly) or whether he just decided to put on his big girl panties and deal, but it really was like night and day.

I would have liked to hang out with him as he had this wonderful day, but it was my home day—check the house, make sure it didn't burn down, stuff like that. And guess what I found when I went to look at the garden?

A cucumber. A whole one!!! We planted 70 gazillion seeds, so getting a whole cucumber out of it is pretty darn special. (Note: I did see a whole bunch more little ones, so it looks like I'm going to be eating a lot of cucumbers in the coming weeks.)

Anyway, I got back to the hospital in the afternoon, and Vic and I had a very nice evening together. We even snuggled on the couch after his last walk of the day.

Next steps: Get that last drain out of his neck (he got the first one out this morning), finish up his antibiotics, and spend three days on the new heart drug. That puts us at 7 p.m. Monday, so a Tuesday discharge date—while not necessarily likely—is not out of the question.

You know, if he doesn't get attacked by an aardvark first.

Postsurgery, the rest of day 5, day 6 and day 7

TL;DR: Lots of ups and downs the past few days. Currently trending up.

Full story:

It has been a real roller coaster over here for the past three days.

After my last post, Dr. Goddard came up to see Vic (Tuesday morning). She was very happy with his progress and said it was time to cap his trach tube, meaning he would be breathing on his own instead of through the tube—and he would be able to speak (even though he was not allowed to speak). HUGE milestone. She said that if everything kept progressing as it had been, then on Wednesday they would remove the vacuum dressing on his wrist, on Thursday they would remove the drains on his arm and neck, and he could go home by the "end of the week." (She didn't elaborate on whether "end of the week" meant Friday or sometime over the weekend, but in talking to some other staff, it sounded like Monday would be more likely than any other time.) She even said she was planning to take the trach tube out before he went home, which would be a miracle. Dr. Song said Vic might have that thing for weeks or months. You wouldn't think anything could top that but then this happened:

Rocky the therapy dog — Vic said it was the best part of his day.

On Wednesday, so many wonderful things happened! First, the ENT team took off the vacuum dressing—which was attached to a machine that we had to lug around wherever Vic went—and the drain in his arm. For the first time since surgery day, Vic was not attached to anything. The freedom was exhilarating.

Next, Vic graduated from yellow socks to brown socks.

Brown socks mean that you can walk around the hospital without a hospital staff member, and no one will stop you and give you a ticket. (I'm pretty sure that's what they said.) More freedom!

And yet ... Vic was tired that day. He no longer had a spring in his step—it had more of a dog-days-of-summer feel to it. Around 4 p.m., he was getting a bed bath, and CNA Erin took his temperature. It was a little high—in the 99s. She finished the bath and his temperature was a little lower, but a little while later, Nurse Rachel came in to take his temperature, and it was in the 102s. His blood pressure was even worse. From time to time in the ICU, it had climbed as high as 188 over whatever (it was the 188 that was alarming, so I didn't pay attention to the lower number). I mentioned this to Rachel, and she said, "Uh, yeah, this is beyond that." That's when the medical staff went into "medical staff mode." Rachel started making phone calls and got Dr. Talmege (I think of him as Dr. Goddard's right-hand man—he's at nearly all the rounds), who was in surgery. He scrubbed out and came right upstairs. Rachel took 70 gazillion vials of blood to do cultures and blood tests and whatnot to find out what was wrong. She gave him some medication to lower his blood pressure and hung some fluids and a broad spectrum antibiotic. She stayed an hour past her shift time to make sure nothing fell off the radar. A fellow came in to take a chest X-ray. They took a urine sample. The theory was that he had contracted an infection.

It was all pretty scary, and Vic kind of thought he was circling the drain. But, as is often the case with Vic, he wasn't. The fluids helped a lot, and his blood pressure and temperature both came down. He felt pretty crappy all night, but it definitely wasn't as crappy as before.

The ENTs came up for morning rounds and said whatever was going on wasn't in the blood and was probably in the lungs. The respiratory therapist said she'd heard pneumonia was a likely suspect, so they were treating that. I still haven't heard a formal diagnosis, but I'll ask the ENTs in the morning.

Around 9:30 a.m., Vic woke up and had to go to the bathroom. So I went over and disconnected him from his IV and leg pumper thingies (it's a medical term—look it up), and he got up. BEEP! BEEP! BEEP! Oops. They turned on his bed alarm. The charge nurse came running—apparently they've had a few falls lately and are really trying to avoid it. What I didn't realize was that they had "downgraded" him to need assistance again because he was connected to the IV and such. The morning was marked by miscommunication and frustration between me and the nursing staff. I'll spare you the gory details, but let's say I was just shy of Shirley MacLaine in Terms of Endearment, and it wasn't my finest moment. 😐

Fortunately, by the afternoon, Vic was feeling much better than yesterday, and he kept getting better all day. He took four walks, all fairly springy. He sat in the chair twice (more tiring than you might think) and sat up in bed for awhile. As is often the case when I am doing the blog, he is sleeping soundly.

I had thought all of this would really delay his discharge, but the night nurse said they were still planning on removing the trach tube Friday or Saturday, so we're still moving forward!

We've had quite the ride the past few days. Hoping the next few days will be a bit brighter!

Postsurgery, days 3, 4 and a little bit of 5

TL;DR: Vic has moved out of the ICU and onto a "regular" floor. He also got his old trach tube replaced with a new trach tube that allows him to speak. (Although he is not supposed to, so don't everyone be calling here at once. 😉)

Full story:

Since last we met, Dr. Goddard (the surgeon who created his new tongue) came by to see him early Sunday morning during ENT rounds. That was an exciting appearance! She said, "You can't ask for it to look much better." She should know! She ordered them to increase his tube food (did I mention that they'd started his tube food?), and she wrote an order to move him out of the ICU.

Moving out of the ICU takes a super long time—they have to wait for a bed to become available—so we stayed in the ICU all day Sunday and Monday.

Monday, Nurse Kate told us the ENT team had ordered a new, smaller trach tube, and the next think you know, the respiratory therapist brought up a bunch of supplies—including a cuffless trach tube. Kate and the RT didn't know when they were going to put it in, but now it was ready when ENT was. Kate was kind enough to tell tell us a lot about trach tubes.

(Any errors in this description are mine.) The trach tube sits low on his neck, below the vocal cords. The tube he had in on Monday was cuffed.

My finger is pointing to the "cuff"—can you see it?
It's kind of like a balloon.

This cuff inflates and presses against the windpipe, which blocks the airway and keeps the vocal cords from working.

A cuffless trach does not have that "balloon" and thus allows speech. You just have to put your finger over the hole.

Going from a cuffed trach to a smaller, cuffless trach is a huge step.

It looked like we weren't going to get a bed Monday, so after a nice walk around the ICU ...

...we went to bed. I wasn't looking forward to another night in the ICU—so loud, bed so uncomfortable, so many interruptions for Vic (I sleep through most of them)—but the quality of his care there was unquestionably high, so that far outweighs any inconvenience.

It would have been nice to move during the day or even in the evening. But sure enough, 5 a.m. Tuesday, Nurse Kyle comes in and says, "GET OUT" (he might have been a little nicer than that), and by 6 a.m. we were on "the floor."

At 6:30, the ENT team came in for rounds. They did their usual—look at everything, do a Doppler (like a tiny ultrasound to check for blood flow), check all the wounds. But today, they also put in the new trach tube. The doctor put his finger over the hole and said, "Say your name," and Vic said "Vic"! So exciting!

He is now sleeping soundly, and I'm about to take a cat nap before I start my workday.

Lots of great stuff going on down here in Aurora, folks!