It's been a long time

I realized it had been a long time since last I posted an update when people started texting and Facebooking and emailing asking me how Vic was doing, but it's the fourth quarter at work, and if you know anything about me and my work, you know that means tons of overtime. Not only that, but starting around Thanksgiving, it's Scallion time, so whenever I'm not working at my office job, I'm working on The Scallion.

But we mailed The Scallion Wednesday, I updated The Scallion Blog Wednesday night, and now it's time for The Cancer Blog.

When last we met, Vic had just come home from the hospital after a bout of dehydration and pneumonia. He actually did quite well at home, and the fear I had that he was going home too early quickly dissipated.

Things were pretty quiet for the next few weeks, and in November Vic had another PET scan and a follow-up visit with the surgeon. I won't make you wait: the PET scan was clear. This is (obviously) great news. The surgeon, while happy with the results of the PET scan, was not happy with Vic at all for taking out the feeding tube. He is still really concerned about Vic's swallowing and the risk of aspirational pneumonia. We mentioned that he has had swallowing problems for 9 years and has only had aspirational pneumonia once, and now that we know the signs, we can watch for it and not let it get that far again.

This did not convince the doctor. Every time you get pneumonia, it weakens your lungs, and with Vic's overall health not being that great, it's a bigger risk for him. Eventually, he said, Vic might not be able to fight off a pneumonia. He said he wanted Vic to get the feeding tube put back in. Vic said he did not want to put the feeding tube back in. Sparring ensued.

Eventually Vic agreed to get another swallow study, and if that showed a continued problem with aspiration, Vic agreed to discuss it with the doctor again. Well, naturally, the swallow study did indicate a continued problem—although his swallowing had improved since the last one—and, naturally, the doctor said he wanted Vic to put in the feeding tube.

Vic had been thinking very hard about what he wanted. We told the doctor Vic was considering putting the tube back in and he would make a decision by the time he went back to see the other surgeon in December. We did ask for him to go ahead and send an order to get a feeding tube to our hospital up here so that if Vic decided to get one, he could get it rather quickly, and that's exactly what happened.

In the end, it was more an issue of how long it was taking Vic to eat during the day—it basically consumed his entire day—and how he was still not gaining any weight. Not only that, but when he doesn't feel well, it's much easier to just pop open a carton of tube food. He is now on about half tube food, half regular food (it's still important for him to keep swallowing real food).

At the beginning of December, we had an appointment with the oncologist. He's been gently prodding Vic to get a bone marrow biopsy because he has some funky protein levels in his blood (paraproteinemia). This is something our favorite Aurora nurse practitioner Katie first pointed out. It could be nothing, or it could be multiple myeloma, and if it's multiple myeloma, it could be something to treat (it's treatable), or it could be something to watch. That's why the oncologist hasn't pushed harder for the biopsy.

So Vic had been politely declining the oncologist's suggestion because he's tired of seeing doctors. At one point, we had appointments on four out of five days of the week—and sometimes, more than one appointment on one day. The oncologist understood this and, since he wasn't too concerned about the levels, accepted Vic's decision.

On the day we saw him (December 9), he once again suggested a biopsy (as we knew he would). Vic hesitated, and the oncologist said, "Let's just wait until after the holidays." He did want to do some bloodwork since it had been awhile—just to see how everything was going. I asked if he was going to check the platelets because I'd noticed some extra bruising, and last time that happened, Vic's platelets were abysmal (like, 100). The oncologist said if the platelets weren't good, he'd do the bone marrow biopsy on Friday. We did the blood test and went home.

Sure enough, a few hours later the oncologist called and invited us back. Vic's platelets were 37. Oops. So Vic had a bone marrow biopsy a week ago. We won't get the results until December 30.

Our wonderful medical assistant, Autumn.

 

Vic's bone marrow—too gross? Hope not.

Vic's favorite medical appointment are with his physical and occupational therapists. He loves them. They are very caring, but also they get him and his sense of humor. There's a lot of laughter and love in these sessions.

Jodi, Vic and Lisa

Aside from all of this, Vic is ... OK. His health really varies day to day, and he never knows how he's going to feel when he wakes up. Some days are better than others. Every day brings something different—not always good, but not always bad. So we are really living one day at a time.

As always, we appreciate all your good wishes and thoughts and prayers. We're so lucky to have our wonderful family and friends. 💖

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."

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!

He speaks! (with a white board) -vl

Editor's note: Vic is up and sitting in a chair and asked for his white board. He sat over there writing and writing and writing, and then he called me over and showed me this:

In case you can't quite see it, it says (with minor edits for clarity):

• 4 days in ICU: ICU people are awesome
• Supposed to move to "not dead yet" floor today
• Worst part: trach tube
• It makes an annoying noise, and it's sore
• It sometimes sounds like Jumanji drums
• Wifey perfect

That last bit is the real reason I included the picture, so you would all know I didn't make that up. Plus the white board is what qualifies this as a -vl post. In his own words!

Postsurgery, day 2 (I guess we've established this as a subject line)

Yesterday was a great day. Everyone who checked on Vic said he looked fantastic and he was recovering splendidly. Isabelle from Dr. Song's office said "You're the best of anyone I've every seen on Day 1 post-op." The occupational therapist, Emily, couldn't believe he'd already been up and sitting in the chair. It's very encouraging about the rest of his recovery. His sister Alice spent the afternoon here, and his sister Patty came for a nice visit after work. He spent the evening resting and watching ... you guessed it ... a Rockies game.

Today his assignments were to try to sit in the chair three times for as long as possible, to walk to the bathroom instead of using the bedside commode, and to try standing at the counter for 2 minutes (as if he were shaving or washing his face).

I actually didn't spend most of the day with him today—it was my designated chore day—but by the time I got back, he had been on two walks (for a total of six laps around the ICU) and had sat in the chair twice. (The night nurse will have him sit in the chair again tonight.) Not sure if he'd done any standing, but I am uncharacteristically going to let it go. 😉 He has also started the dreaded tube food (if you were around for the last round of cancer, you know that tube food was his nemesis), and so far, so good. Whew!

He is still doing "better than average" (according to another doctor from Dr. Song's office). They do not expect people to be up and walking around at this point postsurgery.

An anesthesiologist from the Northern Colorado UCHealth also stopped by today and said she thought he was doing really well. His tongue is much less swollen than she's seen in other patients she's worked on. Then she gave me a T-shirt from a Weird Al concert she attended recently. Those Northern Colorado doctors are really into patient satisfaction!

Full disclosure: The anesthesiologist is also my niece.

Normally, Vic's second day after surgery is the worst day. The drugs from the surgery are wearing off, so he's in a lot of pain; he's super uncomfortable in the hospital bed and he's bored out of his mind. That hasn't been the case today—which is a good sign!

He's resting comfortably now (OK, he's sound asleep), and when he wakes up, we'll turn on ... you guessed it ... the Rockies game.

Probably no update tomorrow. Not a lot goes on in a hospital on the weekend, and there's no plan to move him out of the ICU. Also, I'm starting back to work on Monday (on call, so I probably won't work full time, and from the hospital, so I don't have to get out of my flip flops), so that will also curtail the updates, but I'll try to post every couple of days after work. If you don't get an update, assume everything is smooth sailing!

Postsurgery, day 1 (in which a clever title eludes me)

Good morning!

TL;DR: Everything went well in the evening, overnight and in the morning. Many doctors, nurses, students and others have been in and out—they all say he’s doing great. Perfusion (blood flow) in the tongue is great (probably the most important outcome of the surgery besides getting all the cancer out), all the wounds are doing what they should do, and he is sitting up as I type this. His mood is pretty good. Communication continues to frustrate him, but being able to get out of bed and move around will have a huge positive effect on his emotional well-being.

"Good morning, everybody!"

Full story:

He was kinda sleepy most of the night, but then at 10 p.m., BOING! Eyes wide open. This is usually about the time he really wakes up at home, and then he stays up until 2 a.m. or so. Fortunately, although he was wide awake for about a half-hour, he fell asleep rather quickly.

The nurse came in every hour to check on him—and stayed for a really long time each time. They are very thorough here, and that gives me a measure of comfort. When the night nurse (Tristan) came in at 6:30, he said Vic had done very well overnight, waking up when Tristan came in and then falling right back to sleep. It’s probably the most sleep he’s gotten in a month.

He’s been through two sets of rounds this morning, and neither of them was like Grey’s Anatomy. On the first set of rounds at 6:30, a swarm of locusts (I mean, doctors) descended, picked over him—each looking at a specific thing. One was looking at the tongue, one at the wrist, one at the thigh, one at the neck, etc. I heard them talking to each other and saying everything went well yesterday and things were looking great this morning. One of them—I think it was Dr. Gonzalez from Dr. Song’s office—asked if we had any questions. We didn’t. And as quickly as they came, they were gone. There were no introductions, no pleasantries. Just business. To be clear—I do not care whether they are friendly. They have a job to do, and they do it well.

The second set of rounds at 9 a.m. was what I would consider a more traditional rounds. A doctor, a bunch of nurses, and students. They did an extremely thorough review of his medical history, then did a systems review, then did a medication review—every single thing he was taking and why. They know everythingabout him! Then they all came in, and the doctor looked at all his wounds while the students looked on. For those of you keeping score, his platelets are 166. Now that surgery is done, the platelets aren’t as much of an issue—although they did say yesterday that they would be working with hematology to get guidance on the pesky platelets problem. In the end, they said his was an “easy, straightforward case,” and they expect him to be in the ICU for 24–72 hours.

Our current nurse is Emily. She couldn’t be a nicer, more professional person. She has been checking his perfusion—making sure the graft is taking hold. It is—his perfusion is great. (“Great” is a word I’m hearing a lot from these people. Such a relief.) She just took out his catheter and his A-line (no, not the train—it’s something they put in his ankle to check his blood pressure) and moved out of bed and into a chair. Nothing will improve his mood more than being able to get out of bed.

His communication frustration continues, but even that has improved overnight. Although it is still hard to understand him (he is moving his mouth and trying to speak, and apparently this is OK because no one says “DON’T DO THAT!!!”), he gets enough out that when he starts writing something, you can put it together pretty quickly. The biggest problem is that he tries to say one word and expects you to put together his entire thought process, and when you don’t understand, he gets superfrustrated. One time when this happened this morning, he just gave up and wrote “Winter is coming.” Ha! But I am hopeful that this will improve quite rapidly in the next few days.

Finally, a note for all you mother hens: Yes, I had dinner. Yes, I got a decent amount of sleep. Yes, I will eat today. Yes, I am taking care of myself. How could I not, with all of your voices in my ear?

My man is BACK!

Sorry—this was going to be my last post last night, and then my computer decided to hate me, and I was too tired to do a restart.

This is how the rest of the surgery day went:

The surgery was done around 5 last night, but it took three hours to get to see him. I'll spare you the details—let’s just say there were some miscommunications all around.

When we finally got in to the ICU, he was awake and alert, and he wanted his pen and paper right away. He drew a bunch of hearts with initials in them, indicating all the people he loved. He tried drawing a bunch of other things, which we couldn’t decipher—but that's Vic. Anybody can tell. He wanted to show. 

Speaking of showing, the first thing he asked me to do was take pictures of him—ever the photographer. He looks a little like Frankenstein’s monster, but all of these wounds will heal.

He has been super frustrated by not being able to speak, he hate hate HATES being dependent on people to do things for him ("This was my biggest fear," he wrote), he is apologizing for being a pain in the ass, and he already thinks recovery is taking too long.

We're trying to remind him that all of this is temporary. So far, he is having none of it. And it’s only going to get worse as his frustration increases along with his pain level.

And yet.

He can’t speak, but his personality is coming through loud and clear. He may have lost half of his tongue and a bunch of his lymph nodes, but he hasn’t lost his sense of humor. He has already figured out how to use the TV remote. Sure, there will be some changes—the new normal, as I mentioned in one of my other posts—but underneath, he’s still Mailman Vic, Victor Arlove, Boo, Veeeeeec, Uncle Vic, Gunc, Dad, Pop, brother, friend. And that will never change.

Vic's Bitmoji will have to do until he is more ... photogenic.

Surgery day, SURGERY COMPLETE

8:23 a.m. And so it has begun. Vic went back to the surgery suite at 8:07. Interestingly, they originally said 10 hours, and then this morning Dr. Song said 8 hours, but then Dr. Goddard said 13 hours. So … yeah, I don’t know. They’ll call throughout the day. Watch this space for more!

8:28 a.m. OK, I just got this video from Roxie, my friend Jason's dog, and everyone needs to see it. Turn the sound on and be prepared to laugh until you cry (because you are laughing so hard).

10:14 a.m. Just got a call from the nurse. Surgery started around 9:30. I would have thought it would have started closer to 8:07, but what do I know? FYI, the 8-, 10-, 13-hour estimates were all "door-to-door," so we don't have to restart the timing clock. the 8, 10 or 13 hours started at 8:07. :-)

11:33: No real update, but I'm getting more of these talking animal videos, so I can't help but add them here:

Jasper

Porter

And apparently, you should never, NEVER leave your phone unattended around your dog, or he might make you a talking pet.

Porter's mom (my cousin Kim)

12:26: Dr. Song has finished his surgery and came to give me the "halftime" report.

TL;DR: Cancer removal is done; the margins are negative (meaning: no more cancer). Reconstruction surgery is starting. Expected finish time: 5 p.m. For those of you who have been mothering me, I am now going to go have lunch.

Full halftime report:

• He decided to just do a full-on hemiglossectomy (removal of half the tongue) rather than taking a bit at a time and checking the margins, taking a bit more if needed and checking the margins, taking a bit more if needed and checking the margins. He made this decision because follow-up radiation really wasn't an option, so he really wanted to get all of the cancer. He then sent the tissue to pathology, and the margins are negative. Repeat: The margins are negative. That means he got all the cancer. YIPPEE!
• He saved as much of the back of the tongue as possible—but Vic will need some swallowing therapy.
• He took lymph nodes on the right and a little on the left, but with the scar tissue from his previous radiation, doing anything more would have been difficult. Since there was no indication of any cancer in the lymph nodes, he feels he got as much as he needed.
• They did put in a trach tube. Look it up—it's not pleasant. And although we knew it was coming, Vic won't like it.
• There is a tiny bit of nerve damage to his lip, so he may have an asymmetrical smile. You know he will milk that as if he only had just the one kidney.
• He was having a lot of pain from his feeding tube procedure on Tuesday, but Dr. Song said it looked healthy. The pain might have come from ... you guessed it, the scar tissue from Vic's previous cancer experience.

Although we were hoping for less than a hemiglossectomy, nothing here was unexpected, Dr. Song finished early and said everything went well and Vic was doing great, and THE MARGINS ARE NEGATIVE, in case you missed that above. He expects the whole thing to be done by 5 p.m.

A few minutes after Dr. Song finished his halftime report, the nurse called from the OR to let me know everything was going fine and they were moving forward. (They're supposed to call every two hours, which is a nice benefit.)

Here's another talking dog from my (step)sister Kay to carry you over until the next update.

3:36: The nurse called from the OR to let me know everything was still going fine. On my way to the bathroom, I ran into the director of anesthesia, who has been doing Vic's anesthesia all day. She said he was doing great—and in particular, she said "I can tell he's strong." Vic is so strong that he radiates strength when he is under sedation. Not a surprise to anyone who knows him, right?

In the meantime, some of you mothering types have asked if I'm all alone in the big, scary waiting room. No, I am not. I am with my sisters. Please pay particular attention to our shirts, which we got specifically for today. I hope the next update is "surgery complete."

5:37 p.m. Dr. Goddard just came out of the OR with the final surgical update!

TL;DR: Everything went well (Dr. Goddard: "I couldn't have asked it to go better"), Vic is in the ICU and responsive, and we are in the waiting room waiting to be told we can see him.

Full postop report:

• Everything went well. Dr. Goddard was able to do her Plan A and didn't have to alter her course for any reason whatsoever.
• Vic is awake and responsive (he does things he is asked to do, like open his mouth—I wonder how long it will be before he will do things that I ask him to do), but loopy—one of the lesser-known dwarves—and sleepy.
• He has a vacuum dressing on his arm, plus a drain.
• He has two drains in his neck.
• I said, "Ew, that's a lot of drains," and Dr. Goddard said, "Actually, that's fewer than normal." Once again proving that Vic recovers strong!
• He has lots of sutures, bandages, staples, etc.
• Says Dr. Goddard: I couldn't have asked for it to go better.
• The waiting room crew has moved from the surgical waiting room to the ICU waiting room. We should be able to see Vic in an hour or so. Yippee!

I may send one more update tonight—but don't wait up for it.

Thanks for all those jokes, memes, texts, videos, comments on the blog, comments on Facebook, thoughts, prayers, healing energy, light and love. THEY WORKED!

T minus 7 hours 😬

Greetings!

So here we are, counting down the hours until we can stop being scared and anxious and nervous and start down that long road to recovery. I'll take that road any day.

I will keep a running blog post throughout the day as things happen (rather than creating a new blog post every time the nurse calls and says he's still in surgery, which she—or he, some of our favorite nurses have been men!—is supposed to do every hour).  So if you find yourself wondering how things are going, come on back to the blog!

I've had a lot of people ask if it's OK to call or  text or email or send owls to me, and my answer is "OF COURSE." When I'm not crocheting or eating gobs of chocolate, I will be obsessively checking my phone and computer, and nothing will fill my tank faster than heartfelt messages; funny memes; pictures of your kids, your animals, or your kids with your animals; videos you think are hilarious; Bitmojis; or just a smiley face to let me know you're thinking of me.

That said, to paraphrase what we used to say to beloved foster dog Cupcake, "You can't be thinking of me all the time. Sometimes you gotta do your own stuff." I know you're working, or taking care of kids, or just having your own life and maybe even your own problems. So if you don't reach out, don't worry. I know I'll pass through your thoughts tomorrow, and that will be enough for me. 💖

Let me finish as I often do, with some pictures and some mushy stuff.

First, here's a picture of Vic (and Bella) with a new blanket:

This one was commissioned by my sister from her friend Jeannie Peppel. I can tell you that Jeannie must be a really good friend, because I don't think I would make a blanket for someone's brother-in-law. It's super warm, and it complements the quilt he got last week. In fact, as I am writing this blog post, he is firmly ensconced under both of these blankets. (He tends to get cold at night.)

Next, a few pictures from a little family pool party we had on Monday:

This is after I did something that I thought was hilarious—which, of course,
it was—that Vic thought was ... let's just say less hilarious.

Me, Vic and my mom. I actually don't think we have any other
pictures of the three of us, because Vic is usually behind the camera.

I love how we're all laughing in this picture. This is, in front, my great
niece Madi and my great nephew Will. And in back, me, my great niece
Fin, my niece Margeaux, and (of course) Vic.

And what I love about this picture is that we got the photographer of all
the other pictures in with us—my nephew (Margeaux's husband) Xan. My
only regret in these pictures? My sister was there, and we didn't get her in
any of them. Whoops! Well, she did take this picture, so maybe that counts?

Margeaux made two delicious bread puddings for Vic (he loves bread pudding), and we had fun just sitting around watching the girls jump in the pool.

Then today, I got some new pictures of my Wisconsin niece Layla and nephew Harrison:

I feel like Nick and Margeaux were just this age—I don't see how they have families of their own.

Finally, tonight we had a family pizza party with Vic's family. I say "Vic's family," but they are my family too. I don't know how people survive with in-laws who treat them like out-laws. (An old family joke.) Sorry—no pictures of tonight's party, and I don't have any good pictures on my phone. You'll just have to imagine how much fun we had.

I really do have the best family—my birth family and my extended family of in-laws, in-law-in-laws (my sister's in-laws), and steps. They make me who I am—strong, resilient, loved. They allow me to be my goofy, picky self with no judgment (well, maybe a little judgment, but only an eye roll here and there). They take care of me and they care for me. They are my Drogon—fiercely protective, fiercely loyal.

But the really mushy part today has to go to Vic. He calls himself Wonder Whiner—and to be fair, he has done his share of whining (deservedly so)—but in reality, he has been more like SuperStoicMan. He continued to take care of himself and Bella and our critters (birds, skunks, raccoons) and the garden and the house long after I would have used cancer as an excuse to get out of everything I didn't want to do. He even washed my car the other day. He really doesn't like being "sick," and he's had a pretty rough road these past few years. Many people might give up, but not Vic. He told me the other day that he thinks he has more life in him yet, and that's why he's going through this horrible, massive surgery with the super long recovery. Well, that, and he doesn't want to look like a sissy. 😉

So I leave you today with this rare candid photo of me and my husband of almost 31 years, the strong, kind, loving and absolutely hilarious Victor R. Love.