Good-bye Feeding Tube; Hello Freedom

Well, it's official. The last week in March, Vic got his feeding tube out. It was a question mark right up until the very end, because the first week on no cans went really well, and then we got the flu and were laid up for about a week. During that time, he lost about five pounds. On a frame that didn't have five pounds to spare. And in a week during which he wasn't supposed to lose any weight.

Fortunately, the doctor understood and said it was OK to get the tube out, and Vic has since regained the weight he lost to the flu.
I know everyone wants to know what the tube looked like, and what Vic looks like now without the tube. ;-) So here are a few pictures.

This is the tube:

Apparently, it was all curled up inside his tummy. So they cut it off on the outside, which makes it uncurl on the inside, and poof! You just pull it out. He didn't even have to leave the room. I didn't even have to leave the room. It was a little crowded, though, because all these people were in the room with us:

Then 1-2-3, the tube was out. Put on a gauze pad, send him home. Take off the gauze pad the next day, and voila! (Or "viola," as my friend Rhonda used to joke.) All fixed.

So now he has a second belly button.

It was one of his best days, because other than the constant dread that the cancer will return—this was his last reminder that he had (whisper) cancer (end whisper).

Meanwhile, our lives—and the lives of those around us—have continued. We have a new nephew:

Our niece Margeaux and her new husband Xan

We have a new grandson:

Our new grandson, Ryan Scott Love

And of course, we still have Princess Wagglebutt Ginger Love:

So what's next, you ask? Well, there's a dilation on May 2. It's been a month since the last dilation, and Vic is not feeling like his throat is closing up yet. So that's a good sign. Would be really nice if he could always go two months between dilations. Or, you know, MORE. :-) And then there's a new PET scan. That's June 4. I'll be curious what happens after that—assuming it's clean. Vic's oncologist actually said "I don't think you need another PET scan, just a CT scan." But the radiation oncologist had said she wanted a PET, so the oncologist set one up. But if it's clean, I would bet that the next scan (which should be another six months from that) will be a CT scan. Woot!

Food is still a challenge—but he continues to learn what foods he can eat and what foods he can't. He continues to be disappointed by the foods he no longer enjoys, but I admire his stick-to-it-iveness in continuing to try things he assumes will disappoint him and to try new things that he might not have liked before. He's been quite the inspiration through all of this. If I ever get cancer, I'll probably have to read this blog every day just to remember how to behave. Because otherwise, you know I'm going to be whining 24x7. ;-)

Once again we thank our family and friends for their unwavering support. You all helped us get through this ordeal in ways small and not-so-small. LOVE YOU!

Vulture Been Doin'?

When last we met, Vic had just had a dilation that allowed him to start swallowing better. Since then, he has had two more dilations (and will have another one in about six weeks) and has continued to swallow more or less ;-) fine. It's good news that we're waiting six weeks for the next dilation. Since we don't know for how long he's going to have to have these things, at least having them farther apart is a good thing.

On the tube food front, he was at six cans a day. To get the tube removed, he needs to be off tube food completely for two weeks with no weight loss. So when he started eating, he started cutting down on the tube food. After a week at five cans with no weight loss, he decided to drop another can. I thought it was too soon. I thought two weeks would have been better—stabilize for a while—but once he gets it in his head he wants to do something, it's best to just let him do it. And of course, he was right. A week on four cans with no weight loss led to three cans, two and one. Today, he had what he hopes is his last can of tube food. If he can go two weeks with no weight loss, he will get rid of that tube. Nothing makes him happier.

With all that good news, I do so hate to complain. But I am, after all, me, so here goes. His taste still isn't the best. The first bite of most things is pretty good, but as he eats more bites, the tasty goodness disappears and nothing tastes great. Yet he must keep eating. Imagine if you will that everything you ate had no taste. It would not motivate you to eat much, would it? For many of us, that might not be so bad—if I couldn't taste, I might not eat as much, and BINGO! New diet. But he's lost just about as much weight as he should. And he still has to keep eating. So I feel sad for him. But he is learning what he likes—and what he doesn't—and we've even been to a couple of restaurants. Plus, he never whines. I can tell you (and so can he), I would be whining all the time.

At any rate, that's all the news from here. Considering he could be dead right now, or really sick, or a whole host of other things, I'll take what we have.

Much love from Vic, Patty and Princess Wagglebutt a.k.a. Wags

Mid-January Update

So, it turns out that when there is nothing earth-shattering to say or life-threatening happening, I am ... not a very good blogger. ;-)

So without further ado, let me tell you what's been going on.

Nothing.

OK, so, good blog post! See you in a few weeks!

Ha ha, just kidding—but it really isn't far from the truth. We truly are just going from day to day, carrying on with our lives as they used to be—kind of boring. Which is good news, right?

The only excitement we've had the past few weeks is the second barium swallow and throat stretching. Vic had a follow-up appointment with the gastroenterologist on January 11 and told him that he wasn't doing very well in the swallowing department again. The gastroenterologist said "OK, we'll do a something-o-gram, and then we'll do another dilation." We were very happy. Until the "something-o-gram" turned out to be the barium swallow that almost choked him the last time he had one.

Vic asked the nurse, "Is this the thing with the pill?" And she said, "Yes." And Vic said, "Did you hear the part where I said 'I can't swallow pills'?" And she said, "Well, this is what the doctor wants." And Vic said, "Well, you might mention that I can't swallow pills, and the last time I did that with the barium swallow, the entire staff of the radiation department at the hospital practically had a heart attack because I almost choked."

So we went home, and I scheduled a barium swallow, and Vic lost a lot of sleep that night.

The next day, Vic had an appointment with the otolaryngologist and mentioned the barium swallow and his reluctance to, you know, want one. And the otolaryngologist said, "Just tell the doctor you don't want to do the pill. He can't make you." And we thought, "Easy for you to say; you're a doctor. We go in and say that and he's probably going to cancel the dilation, which Vic really needs." Fortunately, the otolaryngologist kept digging around and found the report from the last barium swallow—which stated in no uncertain terms that Vic was not supposed to do another barium swallow with a pill.

So Vic called the gastroenterologist's office, and they finally caved and said he didn't have to use the pill. Vic got a lot more sleep that night.

So he had the barium swallow last Monday, and they found that the stricture was very, very small. No wonder he was having trouble swallowing! The next day, he had the dilation—and as soon as it was over, he was already swallowing better, even though his dilation was smaller than the last time (11 mm—a 33 French, they said—versus 14 mm last time; normal throat size is about 20 mm). This dilation just seems better than the last one, and he has been trying all sorts of food and getting it down better. ALSO, the doctor said we could schedule another dilation in a month rather than waiting more than two months, so that should help him move forward.

The only thing that's left over from the cancer that's keeping him from having a "normal" life is that dastardly tube. And you know I had another adjective in mind to describe that tube, but this is a family blog, so "dastardly" will have to do. ;-) So we are really hoping that these dilations will help him start getting off the tube. As a reminder: he has to go two weeks 100 percent off the tube with no weight loss before they will let him get rid of the tube. He is currently tubing six cans a day and eating practically every minute in between—and he is just maintaining his weight. So it's still a long road ahead. But maybe not as long as the one he's already traveled, and certainly not as bumpy.

The only doctor visits he has coming up is the kidney doctor—just making sure the one good kidney is still in good health after the NotChemo. It should be—the NotChemo drug is not as hard on the kidney as the chemo drug would have been. That's this Thursday. Then another dilation around the middle of February, and nothing again until March.

Vic is super happy to not have to go to as many doctor's appointments as he was going to. He has much more time to lay around, watch movies and eat bon bons now.

Probably won't post for a few weeks unless something changes.

Love you all!

Happy New Year!

Sorry I've been so uncommunicative. At my job, we have what we call "fourth quarter," when all our clients realize they need to spend their budgets by the end of the year or lose them. Not only that, but we close between Christmas and New Year's, so we have to cram an additional week's work in before we close. So I tend to be incommunicado during December. But I have some odds and ends to share, so let's get started!

First, I wanted to tell you about a conversation we had while writing The Scallion. As many of you know, I write The Scallion, and then Vic reads through it and "adds the funny." (That's why this blog is somewhat humorous, but it's never going to be as rip-roarin' laugh-out-loud funny as The Scallion.) This year, I left him a space to tell his cancer story in his own words. So we spent a few of our afternoon walks talking about it.

The first thing I learned—something he'd never shared with me before—was how alone he felt during his treatment. In particular, the radiation treatment. Even if I'd gone with him every day—which I didn't—in the end, he has to be alone in the radiation room. He said it was just the most alone he'd ever felt.

The second thing I learned was the significance of his three bell rings on completion of his treatment. (See August post "Radiation Day 35: Let the Healing Begin!" if you need a reminder about the bell-ringing ceremony.) He said that the first ring of the bell was for Mark Brand, who lost his battle with cancer as Vic was fighting his. (See August post "NotChemo Day 5, Radiation Days 19-23: Dog Days" for more about the amazing Mark Brand.) The second ring of the bell was for Bill DeMoulin, who was his strength and inspiration throughout his cancer treatment. (See August post "Finding Inspiration, Part 2" for more about the amazing Bill DeMoulin.) And the third ring of the bell was for himself, signifying that he had completed his treatment.

I found these two tidbits to be interesting and hope you feel the same way. Do you wonder, as I do, what else he didn't tell us? But that's my Vic—stoic and internal.

Next, I'll tell you about some of the medical appointments we had in December. This part gets kind of boring, so feel free to skim through to the bottom.

As you know, in early December, we went to see the radiation oncologist, who was the first (but definitely not the last) to give us the "clean PET scan" news. She must love days like that, when she gets to tell patients good news instead of bad. She asked how Vic was doing with his recovery, and he said that really, the only thing he has left that hasn't recovered to a large extent is his dry mouth and his throat closing. In terms of the dry mouth, she gave him a prescription for a drug called Saligen. It's a saliva-producing medication that could stimulate the saliva glands into acting on their own. It takes awhile to work (she said four to eight weeks; the otolaryngologist said three months) and has some "interesting" side effects, but it's worth a shot. As for the the throat closing, she agreed with every other doctor that the radiation caused scar tissue to build up in that area, and regular dilations are likely to be a part of Vic's life for the foreseeable future.

[begin whine]
Allow me to digress for a moment. When we first started, I remember very vividly all the doctors talking about treatment and how horrible it was going to be. Mouth sores, dry mouth, sore throat, mucous, nausea, loss of appetite, and so on. But what I don't remember was anyone telling us how horrible the recovery was going to be. Sure, you don't want to add insult to injury at the beginning, but at the end, it would have been nice for someone to take us aside and say, "OK, so, that was not necessarily the worst part of your cancer ordeal," and then describe some of the side effects that were going to linger and for how long. Obviously everyone's recovery is different, but I think they could have prepared us a little more about what was going to happen.
[end whine]

(I allow myself only a little whining. Let's face it—he's cancer-free, and he could be in a lot worse shape than he's in, so I don't want to risk good karma with excessive whining.)

OK, back to the appointment. Besides the dry mouth and the throat closing, Vic had what he thought was a "lump" under his chin, which he was sure was cancer. (Because after you get that diagnosis, everything is cancer.) But she said it was lymphedema and prescribed physical therapy to help it go away. And she said maybe physical therapy could help with the swallowing as well.

A few days later, we went to the otolaryngologist. He agreed that the PET results were great but warned us that 50 percent of recurrences happen in the first two years (he did not know the percentage of recurrences). So we're not out of the worry woods yet—however, after five years, you are considered cured, so that's a nice long-term goal to have.

We shared The Scallion with "Oly." He was not amused. He did not feel that he came off very well. We told him that no one would believe he had done any of the things we said he did in The Scallion. Then he gave Vic an injection to help with some inflammation, and he said, "I suppose you'll write in The Scallion that I stabbed you in the neck." I told him that by the time the next Scallion came out, the incident would be long forgotten. However, I didn't mention anything about the blog. ;-)

(Just to be clear, our Oly is a great doctor, and we appreciate everything he does for us.) :-)

A week after that, we saw the oncologist, who ordered Vic's mediport to be taken out. This was the thing they put in his chest to deliver his NotChemo. With a clean PET, the need for the port was gone. So a week after that, he had the port removed. This is him after the surgery:

So really, the "only" hurdle left is the food thing. Fortunately, his taste is back to about 90 percent—although a lot of things taste different. Unfortunately (as stated above), his dry mouth and throat closing make it difficult to eat. For the dry mouth, he tried the Saligen. He does feel a decrease in dryness, but it also makes him sweat (this is one of the known side effects), which is bad on two levels. For one, the primary purpose of sweating is to cool you down—and in the middle of a cold winter, you just don't need that. For the other, sweating makes you lose weight—and he does not need to lose any more weight. He is trying very hard not to lose the weight he has.

For those of you who have been following the food battles, you'll be pleased to know that he is dutifully tubing six cans of food a day and trying to eat other things in between tube feedings—hot dogs, eggs, shrimp, Pringles potato chips and pickles are going down fairly well. And in the coming weeks, I can see him trying spaghetti, pancakes, meat loaf and deviled eggs. Bland is not his friend right now.

On the throat front, we have an appointment with the gastroenterologist on January 11. I'm sure he'll recommend another dilation, and I hope that one lasts longer than the previous one did. Until then, Vic is crushing his pills, taking tiny bites, chewing a lot and washing things down with lots of liquid.

After that, an appointment with "Oly" on January 12, and then nothing scheduled until March! Next follow-up PET scan will be in June.

So now that the fourth quarter is over, I'll have more time to blog—although I can't say I'll have enough to blog about. And believe you me, no one wants me to blog about our lives outside of the cancer. We are the world's most boring people.

But we are cute:

Happy New Year, everyone, and thank you again for all your love and support.