May the Force Be with You

OK, one more post, because I promised a Star Wars–themed post. So without further ado, the story of Han and Chewie.

When Vic was first diagnosed, I spent a lot of time on the Internet. There are a lot of bad things on the Internet, and I'm not just talking about that site with bad family pictures from the 70s. I'm talking about the amount of information you can find out about a disease without really knowing what's what. So one of the stats I read about tongue cancer was that the average five-year survival rate is 56 percent. This does not sound good to me. Yes, of course I found a statistic that said if you catch it early and it hasn't spread, the average survival rate is more like 80 percent, but I focused on the 56 percent. I was in the worst-case-scenario/glass-half-empty phase.

But then then this exchange popped into my head:

C-3PO: Sir, the possibility of successfully navigating an asteroid field is approximately 3,720 to 1.
Han Solo: Never tell me the odds.

And I said "Ooh! You can be Han Solo! But not, you know, the Han Solo encased in carbonite. The Han Solo that successfully navigates the asteroid field!"

Of course, then I realized that I was C-3PO. And I didn't want to be C-3PO. That guy's a tool. So I said, "Ooh! And I can be Chewbacca!" And we laughed about this, turned off the lights and went to sleep.

The next day, I told my boss, GerRee Anderson, about (whisper) the cancer (end whisper), and among a thousand other things, I told her the Han/Chewie story.

Now most people would have just filed that away—or more likely forgotten about it. But not GerRee. No, GerRee goes out and finds Star Wars action figures so that we would always have The Force with us.

So now we have the healing energy of the NotChemo quilt coupled with the fighting power of The Force—and once again I say "Take that, cancer!"

Thank you GerRee, thank you Cara, and thanks to all of you who are continuing to support us in so many amazing and wonderful ways. We are stronger because of you!

NotChemo Day 3, Radiation days 9–13

The battle of the feeding tube is over. The feeding tube won. After a few more days of trying to force down food that grew increasingly disgusting to taste, Vic went to the feeding tube full time last Sunday.

It was miserable. The nutritionist said he needed to take six cans, which is about 2,250 calories. Vic could barely get three down. It took forever, it made him feel woofy and light-headed for a few minutes, and he had a rumbly tumbly for about an hour. Just in time to take a nap and have another can.

His bad nurse (me) kept hammering him about "eating" more, and he did get up to four cans—but that just increased his suffering by 33 percent. ;-) Fortunately, his good nurse stayed by his side and licked him until he was ... well, less sad. Because you just can't be sad with a dog licking your face. (Of course, the good nurse has now abandoned him at mealtimes. Apparently, she will lick her butt, but she will not eat Vic's "food.")

And as if that's not enough, he started having "throat bleeds" again. This was how he found the cancer—but hello??? Cancer found! No more throat bleeds required thank you very much! He was certain it was somehow related to the "food" because they started about the same time he went on the tube full time. He mentioned the bleeds to his radiation doctor, and she suggested that perhaps the radiation was exposing some blood vessels. (Which I interpret as: the cancer is shrinking—yea!). She said if the volume of blood increased significantly or if he felt light-headed (meaning he was losing too much blood), he should go to the emergency room.

The morning of NotChemo, he had a particularly nasty bleed, so he mentioned it to his oncologist. The oncologist said the same thing as the radiation doctor—but he also said a couple of other things. First, Vic's labs showed that the bleeds were not related to low platelets, and they weren't enough to cause anemia, so he wasn't too concerned at the moment. Second, he suggested that Vic try diluting his "food" with water—half and half, or maybe a third water. We decided to try that for his noon feeding after NotChemo.

So, after the oncologist, we skipped (trudged is more like it, but who wants to read that?) back to the chemo/NotChemo room, where Vic was greeted with a cheetah on his NotChemo bag:

Man, I love those nurses! They do everything they can to create a positive energy throughout the room. What would we do without them?

Then Vic covered himself up with his new NotChemo blanket from his friend Cara. She made it for him in, like, a week, and it's filled with positive healing energy to kick cancer's butt!

He was the belle of the ball. Or whatever the man equivalent is.

After NotChemo, we went home and he tried the diluted "food." It went down so much faster and easier, and he tolerated it so much better—have we found the solution for getting enough nutrition??? Best of all, I think he has only had two small throat bleeds since then. One more symptom kicked to the curb. Suck it, cancer!

Unfortunately, the last couple of days have been hard. He hasn't been resting as much as he should because of the Fair (but he needs to do the Fair because it's a "normal" activity as opposed to a "cancer" activity). So his feeding has been harder, and he has generally not felt very good. Plus his mouth is getting drier, and his lips are a little chapped. But he came home after judging today and had a tube of "food," and then he crashed. Then we came upstairs and he laid down on the bed and crashed. Then we took Wags out for a short walk, and we came back and he crashed. I think he is currently ... crashed. With Wags. So getting the rest he needs—yea!

And I think that catches us up-to-date! I have one Fair activity tomorrow, and one next Sunday, and I might go out there from time to time, so don't be concerned if you don't hear anything for another week. If there's something to be concerned about, I'll definitely post it!

Where'd *That* Week Go?

So, it turns out it's been a week since I've sent out an update. Who knows why? That's right—it's time for the Boulder County Fair, and I "volunteered" to superintend the surface stitchery department again. The previous supers quit with about two months to go and no judge. Fortunately, my friend in framing Dawn Hunter said if I did it she'd help, and I said if she helped, I'd do it. And thus was born a temporary partnership. Dawn will be taking the department over next year, and she has someone in mind to help her. I guarantee you it is not me.

But that means that every spare minute this past week has been "prepare for the fair" time. Oh, joy. It was fun when I did it with my friend Linda and we both took, like, a week and a half off from work and sat down at the fairgrounds stitching for 10 days. Ahh, good times. (Which is not to say it's not fun with Dawn—we have very similar ... analities ... so we are a good team. But I resigned for a reason—a bunch of reasons, actually—and those reasons still exist.)

But enough about me, because this blog is about Vic. So off I go to summarize this week's challenges and triumphs. Stay tuned!

Take Me out to the Ball Game

Thursday was a really good day for Vic. He woke up energized, went to Day 7 of radiation and then went to the Rockies game with his sister Alice.

It was a beautiful day, and there was a lot of action.

Then they met up with niece Lisa and her beau Ryan:

Even though the Rockies did their best ...

... they still lost.

Then Vic and Alice picked up her lovely groom Ed, and they all came up for dinner. We had pizza, which Vic didn't hate! Score one for pizza. (However, no score for watermelon, peach cobbler ice cream, steak, Cheetos, ramen noodles deviled eggs—all of which have been tried and found lacking.) I knew I was doing the right thing by selecting it as the one food I would choose if I could only have one food for the rest of my life. :-)

Radiadion Day 8 came and went with no flutters, kerfuffles, V-tachs or haboobs.

One of the nurses we saw on Wednesday said he might start seeing a "chemo pattern." Last Friday, he had that fever, and she thought that might be part of his pattern, but he didn't get one this week, so I think it was just a reaction to the feeding tube.

The saddest news of the week—at least in the Love household; I know there were other great tragedies in the world this week—is that he started using the feeding tube last night. He did not enjoy it one bit, and it even made him feel kind of icky. But that only lasted a few minutes, and when he weighed in this morning, he hadn't lost any weight.

He also says for the first time in six months, he doesn't feel like his uvula is sitting on his tongue—could it be the tumor is shrinking??

So he lost the battle of the feeding tube—but I know he's winning the war of the cancer.

NotChemo Day 2, Radiation Day 6

Ah, NotChemo. A lovely day. Not Chemo day started with his new nurse Shelley:

Just after this picture, Shelley gave him a little kiss on the cheek. All the nurses LOVE patient Vic.

His trusty sidekicks Han Solo and Chewbacca were with him (look for a Star Wars–themed post soon!):

And he got dolphins on his treatment bag:

As with last week, he sailed through NotChemo this week.

NotChemo was followed immediately by NotSurgery. NotSurgery is a little procedure that he needed after his surgery two weeks ago to insert his mediport and his feeding tube. The procedure was to remove the T tags (no, I do not know what they are) around the feeding tube. Snip snip, and it was done. Here he is with NotSurgery nurse Deb:

Now, I must report that the feeding tube had been giving him some trouble—it was red around the tube and ... well ... let's just say the site needed frequent cleaning. Plus inside he was having sharp, intermittent pains. The oncologist was a little worried about the site and prescribed Keflex, an antibiotic. The surgeon was not concerned at all—about either the site or the pain. He assumed that the T tag removal would clear it all up—although he still thought the Keflex was a good idea and he prescribed Valium for the pain. Seriously, Valium is just never a wrong prescription. ;-)

The great news is, since the T tag removal, the site has not needed cleaning at all, it is much less red, and the pain is gone!

Finally, radiation day 6. I might have mentioned in a previous post (I'm too lazy to double check) that on the first day of the mask, the nurse told Vic to look at the picture on the ceiling, but the mask covered his eyes and he couldn't see anything. So one of the nurses cut eyeholes in his mask for him. I'm pleased to report that The Cancer Blog has obtained the exclusive rights to publish the first picture of the mask with eyeholes:

No, his head is not floating in midair—but that would be a neat trick, wouldn't it?

The food thing continues to vex—but he has found two things he can still taste: nuts and Chunky Monkey ice cream (thank you, Ben & Jerry's!). Sounds like a good diet to me!

Tomorrow, Vic has radiation early and gets to go to his birthday baseball game with his sister Alice. He is really looking forward to the outing.

He is now resting comfortably, feeling no side effects from the NotChemo or the accumulated radiation. I think I'll join him.

Radiation Day 5: The Flutter Kerfuffle

After Vic's V-tach episode was reported in News of the World, people started asking questions. The most common questions:

• Dude! What?
• OMG! Are you OK?
• WTF???

Good questions all, but not necessarily the kinds of questions that doctors can answer, so when Vic trudged back to radiation on day 5, he was armed with a few more probing questions:

• What caused the V-tach?
• Do you expect it to happen again?
• Is there a way to prevent it?
• What was his tachy rate?

SURPRISE! The Biotronix people—the people who work for the company that made the device—said, "Oh, yeah, he wasn't actually in V-tach. It was just a flutter. Don't know what caused it, don't know whether you;ll see it again. It just happened. Flutters happen sometimes. We'll keep an eye on it."

Day 5 of radiation continued with no additional flutters. Or V-tachs.    :-)

And it ended with the cutest puppy in the world:

See how her little tongue is sticking out? I couldn't resist. :-)

Radiation Day 4: The V-tach Incident

When last we met, our intrepid hero had made it through his first day of NotChemo and radiation (NC&R) with flying colors.

He then made it through two more days of radiation—but a cople of annoying side effects crept in. As we were warned, his taste has diminished. As he puts it, everything is starting to taste like sawdust. I don't know, that might be good with ketchup. Or not. Then he started running a temperature. Just a low-grade fever, but (a) it was causing him chills, and (b) we're supposed to report when his temperature goes above 100.5. When it hit 100.50000001 (yes, my thermometer goes to the millionth decimal place—doesn't everyone's?), I called the doctor. Sure, it was almost 11 p.m. on a Friday, but I'm a rule follower, and the rules said to call any time night or day.

I was excited to find out that Vic's NotChemo oncologist was on call that night. Until I actually talked to him. I told him that we had been instructed to report a temperature above 100.5, and Vic's had reached 100.6. He said, "He's on the Erbitux, right?" "Right," I said. "Well then, his counts are not an issue." Now many of you may not know this, but I am practically a doctor myself, having watched medical shows since I was a child, starting with Marcus Welby, M.D. (oh, that Dr. Kiley was a dreamboat) through Emergency! (oh, that Randolph Mantooth—yummy), Medical Center (hello, Chad Everett!), M*A*S*H, China Beach, Scrubs, ER (do I want Dr. Greene or Dr. Carter to be my doctor? I just can't decide!) and of course, Grey's Anatomy (McDreamy, McSteamy, Major Hottie—there are just too many to name!).

ANYWAY, I know enough to know that "counts" are white blood cell counts, and when they're too low and there's a fever, that's a sign of ... well ... something. And I know that chemo has an effect on white blood cell counts. So I get what he was saying. But the fact remained that Vic had a fever, and I was supposed to report it. So I told the doctor, "Well, that's great. So are you telling me that I shouldn't be worried about the fever?" And he said, "Well, his counts are not an issue." At this point, I was so frustrated—all I wanted was a little reassurance. Something like, "Yeah, that list of things to report is for chemo, but since you're on Erbitux, a low-grade fever isn't something to be worried about in terms of his treatment. Now, if the fever gets to [insert some temperature here], that is something you should report. In the meantime, just watch xyz. If that stays stable, you should be in good shape. You might also try abc. That sometimes helps the fever." OR maybe ask me some questions, like "What does his incision site look like? Was he exposed to xyz or anything like that?" Just something that didn't make me feel like (a) I'm too stupid to know the difference between chemo and NotChemo, (b) I'm too stupid to know the difference between a symptom to report and one not to report, and (c) I am just a pest.

We hung up, and I had my scheduled meltdown from 10:47 p.m. to 10:54 p.m. Vic, the ever calming presence that he is, talked me off the ledge. (It's not like I'm prone to overreacting—oh, wait. OK, maybe it was just me. I did always think he was a nice person and a very caring doctor.)

Well, Vic's fever did not go up any further and was back to normal by midmorning, so we WENT TO THE HARRY POTTER MOVIE! It was awesome.

Meanwhile, back in the food department, Vic's diminished taste sensation mae him not want to eat. I gently reminded (read: nagged) him that he needs to eat to keep up his nutrition and his weight. The weight is really important because the mask fits quite snugly, and if he loses any weight, he'll be able to move his head in the mask, which could cause the radiation to go ... somewhere else. Furthermore, the radiation is so precisely positioned that even if he didn't move his head, his lesser body mass could cause the placement of the radiation to be off.

He gently reminded (read: gently reminded) me that he understands that and he won't do anything to jeopardize his health or his treatment.

Still he did not eat much, so I changed tactics and bring out the big guns: Nurse Ratched. She's worked for me before. She threatens him to get him to eat. He does not like Nurse Ratched, so he did not cave in to her. I changed tactics again: bargaining. I suggested that if he did something distasteful with me (like, go car shopping), I wouldn't make him eat dinner. This was enough to get him to eat a little bit more. (The truth is, all the nagging/bargaining/pleading/whatever in the world will never work—he is like the lightbulb: he will eat when he's damn good and ready to. I know, I know. That's not really the way that saying goes. But you know what I mean.) Eventually, through sheer willpower, he started eating more. Which is good, because his radiation nurses would not have been happy with him if he'd lost weight over the weekend.

And so I find yet another thing I admire about him—his perseverence. I simply can't imagine not being able to taste food but still having to shove it down my throat. But he does it, every day.

So now you're caught up to radiation day 4, which started with Nurse Wags:

She's so much better than Nurse Ratched. And cuter to boot!

So let's talk about radiation day 4. As you all should know by now, Vic has a defibrillator implanted in his chest in case he has an arrythmia. (Also just the one kidney, but that's a different story.) They don't want the defibrillator going off during his radiation treatments. This would cause him to jerk around, which could potentially cause the radiation to not be delivered to the right place. So they put a magnet over the defibrillator during treatments and have a heart nurse standing by. And it's a good thing, too, because on radiation day 4, Vic went into V-tach during radiation.

Medical aside: ventricular tachycardia (V-tach) is a fast heart rhythm that originates in one of the ventricles of the heart. This is a potentially life-threatening arrythmia because it may lead to ventricular fibrillation, asystole, or sudden death. We've been the sudden death route, don't recommend it.

As Vic tells the story, he was lying in the treatment room all alone (becuase, you know, it's radioactive in there) when suddenly there was a lot of commotion during which he heard the word "V-tach." Someone explained to him that there were some anomalies on his EKG readout and were calling his cardiologist to see what they should do. No biggie. Right—no biggie for you. You're not strapped down to a table by your head with a band holding your shoulders still. You didn't die last year because your heart decided to stop working. YOU DON'T HAVE JUST THE ONE KIDNEY. Just then, one of the nurses came in and just started talking to him in a soothing voice. Telling him all about her vacation to South Dakota and the Big Heads and Devil's Tower and so on. Anything to take his mind off of what was happening. This did not work, but he did enjoy the company. Fortunately, after a few minutes, they came back in reporting that the cardiologist had said it was OK to continue with the treatment, so they did.

Was it scary? Sure was. But he didn't really seem overly concerned about it, which made me feel a whole lot better. :-)