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.

Christmas Came Early

As you all know, this morning we went to the doctor to get the results from Vic's PET scan last week. I'm extraordinarily pleased to report that the doctor said "There is no active cancer that the PET scan can detect—not in the tongue, not in the lymph nodes, not anywhere."

It is basically the best result we could possibly hope for, and we are, as you can imagine, over the moon.

What do you mean, it's been awhile? ;-)

OK, OK, it's been awhile since I updated the blog.

Well, you see, shortly after the last update, we had a bit of a tiff (a.k.a. a knock-down, drag-out fight), and I didn't feel like updating the blog. Then there was a lot of updating to do, and I didn't have the time. But people are starting to notice that it hasn't been updated, and they are wondering if we are still alive.

We are! So without further ado, the update.

I don't want to talk about the fight. If you've been following the blog, you probably already know what it was about. And if you fight with your spouse, you pretty much know about how it went. Suffice it to say that we are mended now and back on a happy path.

One of the things that has put us on the happy path is the discovery of a tube food that doesn't make Vic sick. His old "food" was just getting harder and harder to take, making him more nauseated and less inclined to want to feed or to try to eat anything by mouth (even if he could). A friend of his brought over an Ensure-like drink called Nutrilife, and he started drinking one of those in the morning, which made his first feed of the day slightly less awful. He also tried some eggnog at her house, and he started drinking that to get some calories. But those were only stopgap measures—we had to find a tube food that worked! So we called the nutritionist at Apria (where he gets his "food" from), and she raided their warehouses and brought us up several other kinds of "food."

The first one he tried was a "food" that was actually made from food rather than a formula of stuff. It was much better than the original, but it was only 240 calories. He was going to have to drink, like, eight cans of it a day. The second one he tried was a formula, but a slightly less dense one than the original. It wasn't as good as the first one, but still better than the origial.

But the third one. The third one. Oh, yes, the third one! It carried almost no side effects. It was 300 calories, so he only needs six cans a day (maybe five, if he's eating other things). So we ordered a bunch of that, and it has been pretty smooth sailing ever since. It only takes about 20–30 minutes to feed, and then he can do things for the next hour and a half. Before, it would take at least an hour to get the "food" down, and then he'd have to nap for another hour or two just to feel better. He'd wake up, and it would immediately be time to feed again, and the cycle would start all over. He was miserable. But this new food really works for him. It's still not perfect, but compared to the other food, it is a godsend.

Unfortunately, the news on the swallowing front isn't as promising. We had a follow-up appointment with the gastrointestinal (GI) doctor a couple of weeks ago. Vic reported that swallowing hadn't improved much, and the GI doctor said they could dilate another 3 mm or so (which would be normal swallowing size), but that was about as far as they could go without risking damage. When I said, "As he continues to swallow, will that help? Like if you use your muscles, they get used to being used?" And he said, "Not really. That scar tissue will probably always cause his throat to want to close up, and we'll probably have to do throat dilations for the rest of whatever."

This was a real blow to Vic, and that's when he finally realized that his life may never be what it was before the cancer. (Damn cancer.) All this time, we were thinking that the recovery wll be slow, but when it's over, life will be the same. But no, it doesn't look that way. I think I would have used this as an excuse to take to my bed and feel sorry for myself for a week (or more), but it had the opposite effect on Vic. It made him more determined to take charge of his recovery. On one of our afternoon walks, he said "All this time, I've been waiting for the corner to come to me. Now I know that if I'm going to turn the corner, I'm going to have to walk there myself." He's been faithfully ingesting five cans a day, drinking as much other stuff as he can, and trying new things. We went to Tokyo Joe's the other day—he'd been craving California rolls—and he was able to eat three-and-a-half pieces out of the four he ordered! He is eating more soup when he makes it, and he is able to eat three jumbo shrimps at a time. Other things haven't been as successful, and some have been downright disappointing—but he keeps trying despite the disappointment. I am really, really proud of him.

Thanksgiving was only slightly disappointing. It's Vic's favorite holiday. He loves just visiting with our families, and of course, eating. But it's a very long day. Between his sisters and mine, it's an eight- to ten-hour day, which probably would have knocked him out for a week. And of course, it is an eating holiday, and even though things are getting better, they aren't getting that much better just yet. He would have had to feed three times from his stupid canned food while everyone around him was gorging themselves on the most delicious food in the world. So we didn't go out for Thanksgiving. But his wonderful sister Alice brought up the moistest turkey, the smoothest mashed potatoes and a vat of gravy the day before Thanksgiving, and that's what we had on Thanskgiving day. He wasn't able to eat a lot of it (besides the swallowing issue, his mouth is still so dry that it's hard to eat anything he has to chew, and don't get me started again on the mucous), but he said it sure did taste good. The day after Thanksgiving, his other wonderful sister Patty brought up more moist turkey, more mashed potatoes, the stuffing he had been craving, sweet potatoes and pumpkin pie. Again, he wasn't able to eat a lot of it, but he said it tasted delicious. His sisters sure do love him.

Next up (insert ominous music): the follow-up PET scan to determine whether the treatment worked. It's this Wednesday, and although our medical people seem very sure of themselves, we are starting to get a little nervous. Then he has a doctor's appointment with the radiation oncologist on Monday (12/12) to get the results. You will certainly get a post from me that day—either way.

Since it was just Thanksgiving, I want to take a quick moment to once again thank all our family and friends for all your support. I see little things here and there that tell me you are still thinking of us, and all your thoughts and prayers and healing energy are keeping us going every day.

I'd like to leave you this week with another picture of Wags (shocker). We started writing The Scallion this weekend. It's a little tricky to write this year because I've been blogging and I feel like I've used up all the good lines. But we think we have a good start. We should be able to finish it up next weekend (or weekEND, as my English friend Michelle would pronounce it), and you should see it in your mailboxes (or e-mail inboxes) the week after. Anyway, part of The Scallion is our annual holiday picture. Wags is getting really good at taking these pictures. She scoots into my lap pretty well, and she drops the ball practically on cue. But every once in a while, she gets a little excited that Dad is coming to join us at the tree, and this is the result:

Happy day—see ya back here in a week or so!

The Swallowing Adventure Continues

I really thought I'd have time to write a post on Monday after Vic's enlargement procedure (no, not that kind of enlargement), and here it is Sunday again. Shocker.

OK, so, before Vic had his procedure, this is what he was using to shove pills down his throat:

(It's a shoehorn, for you youngsters who are like, "What?")

Then they sedated him and used this device to make his throat bigger:

(It's a shoe spreader—don't you young people know anything???)

Here's a paragraph for my medical friends—skip if you don't read "doctor." Normal duodenal folds were noted. The stomach was entered and closely examined. The antrum, angularis, and lesser curvature were well visualized, including a retroflexed view of the cardia and fundus. The stomac wall was normally distensable. The scope passed easily through the pylorus into the duodenum. PEG tube noted. A proximal esophageal stricture was not endoscopically visualized. Dilation with a 48 and 51 F Savary dilator was performed. Heme was noted on the 51 F dilator. The passage of the 51 F dilator was noted to have some resistance.

In English: His throat was smushed. They opened it up a little bit.

What's that? You want a little more detail? OK. The doctor put a scope down Vic's throat. Then the doctor put a wire through the scope and put a dilator (a device that apparently looks kind of like a carrot) over the wire and passed it down the throat to open it up a little bit. He opened it to 13 or 14 mm (a normal throat is about 20 mm). This is where Vic started bleeding (that's normal, not a big deal), so the doctor stopped. He said he would probably have to do the procedure again to open up Vic's throat even more.

Vic didn't have any adverse reactions to the procedure, so this week, he started trying to swallow things. Smooth things and things that melt (such as noodle soup broth, ice cream and sherbet, Jell-O, and V-8 juice) all went down smoothly and taste pretty good. Well, not the V-8 juice, but it's juice MADE OF VEGETABLES. What do you expect? Other things taste pretty good but don't go down so well—eggs, quesadillas, chips, meat. And he's still a little nervous about swallowing in general, so that doesn't help. But he's going to keep trying because he has two throat appointments this week (routine follow-ups), and he needs to be able to tell them what he can and can't swallow.

I feel like once he gets over this hurdle, the recovery is not just going to turn the corner but it's going to go hurtling down the hill so fast you won't even see the dust he leaves in his tracks. But right now, I just feel like we're in a freeze frame at the top of the hurdle—we can't get over it, and it's too late to go back. So I really hope they start rolling again. (That's a film reference, youngsters. See, in the olden days, about 20 years ago, they shot movies on this medium called "film," which was wound around ... oh, who cares? It's all digital now.)

And that's about all I have this week, devoted blog followers. Catch ya on the flip flop. (Look it up, young people. I'm not going to do all your work for you.) 10-4 good buddy.

The Swallowing Adventure

If you remember last week's lame blog entry, you may remember that I promised pictures, so here we go.

First, Bryan was here for a visit. Here are my men together:

Vic's family came up to visit Bryan. Vic's sister Alice brought a lovely tart:

Vic's sister Patty brought delicious cupcakes:

Vic was his usual selfless self, foregoing these treats to make sure there was enough for the rest of the family. However, he did have his regular lunch, which he thoroughly enjoyed. Much more than he would have enjoyed the tart or the cupcakes. Much more. Mhm.

This is about as close to pouty as he ever gets. Poor baby.

In addition to promising pictures, I also mentioned his endoscopy. So what could be better than a picture of him at his endoscopy?!

Don't worry, peeps, he was just mugging for the camera. He wasn't really nervous. ;-)

And here he is after:

Pretty much the same; maybe a bit less perky.

I also mentioned the barium swallow on last week's blog. So that happened on Wednesday this week. It was awful. Not for me, because I was just in the waiting room. But Vic said it was one of the worst procedures he's ever had, and let's remember that he lost a kidney 15 years ago, had an angiogram seven years ago and died last year. The doctor wanted him to take a pill. A pill! The same evil contraption that nearly choked him to death a couple of weeks ago! He warned the doctor, "Uh, this isn't going to work." And they said, "Well, take it anyway." So he did, and guess what happened? You can't? You're not trying hard enough. That's right. It got stuck. Now, except for the fact that he had a pill lodged in his throat, this was actually a lot of fun for Vic as he watched the medical community kick into high gear trying to find something to help him get the pill unstuck. And the upside to all of this is that he was vindicated—the pill got stuck while someone was watching, and now he doesn't have to feel like a hypochondriac.

The doctor's office called us the next day to tell us the official results: there is a narrowing of the throat that is causing pills to get stuck. And what did they want Vic to do? Another barium swallow. That's right. Another of the worst procedure he's ever had. Fortunately, they made it very clear this time there would be no pill involved.

So I called over to get it scheduled. This was on Thursday, October 27. "The first available appointment we have is November 9," the scheduler said. I deflated. Now we know there is an obstruction, and we have to wait for two weeks to get it taken care of? So I put on my best disappointed voice—which did not take much effort—and said, "Oh, really?" "Yeah," she said, "the speech therapist only has one appointment a day, and she's booked until then." "Oh," I said, continuing with my disappointed voice. "I see. Well, maybe you could call us if there is a cancellation? My husband can't swallow, you see, and the only thing in the way of his getting rid of his feeding tube is the ability to swallow."

The scheduler took pity on my and must have taken my sob story to the speech therapist, because she called back a few hours later and asked if we could do it the next day. Normally the speech therapist is off on Fridays, but she was going to be in for some other reason and agreed to give Vic his test. And once we got that swallow study scheduled, we were able to schedule another procedure with the gastrointestinal (GI) doctor on Monday (more on that later), which is great, because after that, the GI doctor goes on some sort of vacation (can you imagine?) and isn't available until November 11.

Vic's second barium swallow was much less traumatic than the first, and he got to see a video of his swallowing. It was extremely cool because it was an X-ray video, and he was wearing his glasses. So he looked like a skeleton wearing glasses and drinking stuff. Ummm, OK, it was much cooler than it sounds. Anyway, the kind and flexible speech therapist showed us all the things that were going on:

• He definitely has a narrowing of the throat. She thinks it is scar tissue from the radiation.
• He is getting a little liquid stuck in his epiglottus (no, I am not going to look up how to spell that at 9:30 on a Sunday night), which then trickles down his airway.
• He is getting a little liquid trickling down his airway even without the epiglottus (no, I'm still not looking it up) situation.
• Then he is getting a little liquid on his vocal chords, which is causing his raspy voice.

We really learned a lot about the mechanisms for swallowing and breathing, and she gave him some swallowing tips that have been really helping him.

Now, about that second procedure—he's having another upper endoscopy tomorrow, but where the last one was exploratory, this one is a treatment. They're going to do a dilation and try to open up his throat. This is awesome news, but of course, it is a little scary. So please be thinking of him tomorrow at 11. (Don't think about me; I'm not having a procedure. I'll just be in the waiting room. Send all your thoughts to him!)

So what are we looking at now? Well, the corner is still a long way away, but he is marching inexorably toward it. (Not really. He's baby-stepping toward it, but "marching inexorably" makes me sound smart, and let's face it: this blog is all about me.) Because a lot of good taste is coming back, we are hoping tomorrow's dilation allows him to swallow more than just Jell-O and ... well, Jell-O. The sooner he can swallow, the sooner he can get off those [insert long string of adjectival curse words here] cans of "food." They make him nauseated all day long every day, which pretty much makes him unable to do anything but recover in between feedings. [Insert long string of adjectival curse words here] "food"!!!!! If he can do that, then he'll be at the corner before you can say "Bob's your uncle." Or maybe "Bob's your uncle who farts a lot at Thanksgiving and always gets drunk and tells secrets that were much better left untold."

So that's my much longer, much more informative and (hopefully) slightly more entertaining update for the week.

I often like to leave you with a picture of Vic and Wags, and I happen to have a really good one:

Have a good week, everyone, and I'll catch up with you as soon as I can!