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. :-)

Day 1 of NotChemo and Radiation

Today was the first day of NotChemo and radiation. (The drug therapy he is getting, Erbitux, the monoclonal antibody, is more correctly referred to as "biotherapy" rather than "chemotheapy," so we are calling it NotChemo.)

It started with depressed dog. Wags knows when we're leaving her, and she was not happy this morning.

Then we made our way to the hospital, and into the treatment room. It's a big room with a bunch of chairs for all the chemo/NotChemo patients. Today it was about half full. Here is Vic with his nurse, the beautiful and charming Holly:

Here is the sweet and lovely Holly showing Vic his meds.

Here is Vic hooked up to his meds:

(Cara, note the bag he chose to be his NotChemo bag!)


And here's Vic the joker:

Here is a closer look at his Erbitux bag—the nurse who prepared the concoction puts stickers on the bag. Stars indicate a first-time patient. They really want you to feel cared for here. :-)

During NotChemo, he tried to FaceTime with Bryan ...

... but the connection is not that strong in this wing of the hospital, so that didn't work too well.

He made it through the NotChemo with flying colors, and we got to go home to Waggy for lunch. She was very excited to see us, and after lunch, she ran to get the ball—because that's what we do after lunch. This is how she reacted when she realized not only that we weren't going to play ball but also that we were going to leave her again:

So, off to radiation. When we arrived, the Biotronix people were there to check his defibrillator. The radiation shouldn't bother the defibrillator, but they just want to make sure. They also had a crash cart and a special nurse who monitors heart rhythms. They really don't want Vic to crash here! And (whew!) he didn't.

The radiation techs said he did a great job. Vic said, "Apparently they didn't hear the weeping." I actually did hear something from the room I was waiting in, kind of a cross between a shriek and a wail and a moan—like the mandrakes in Harry Potter and the Chamber of Secrets—and I was worried it was Vic. But when he came in a few minutes later, he said, "Well, we killed at least one of the little buggers today," and that's when I realized the sound was a cancer cell running and screaming from the building! Take that, cancer!

Two more radiation treatments this week—then we're off to the final Harry Potter movie on Sunday!

I'm pretty proud of my man today. It's easy for me to be strong and positive—I'm not the one with cancer growing in my throat and poison running through my veins and radiation searing the inside of my mouth. But he never wavered today. He never stopped smiling, never stopped cracking jokes, never whined. Sure do love that guy.

One Kidney: The Prequel

So it has come to my attention that some of you don't know about Vic's first near-death experience. It was April, 1995. I was in school, he was at IBM. Early one morning, he woke up with chest pains. He'd been expecting something like this—his mother died of a heart attack when she was 51, and he was 49. So we drove to the hospital, with him complaining all the way about being robbed of his last two years of life.

They treated him as if he were having a heart attack and kept him in the hospital to run some tests. On the day that they were going to perform a heart catheterization, he felt a little gassy in his tummy. They decided to get Bob the radiologist to do a sonogram of his belly, just to see if anything was there. Bob was very thorough—he had to press and prod, but he finally found something. A mass.

"A mass" is not something you want to hear. Ever.

They canceled the heart catheterization and scheduled a CT scan instead. The CT scan confimed "the mass," and the doctor, Charles "Chip" Stark, said that they would need to do surgery to see what it was. He suspected cancer, and if that was the case, there were two options. The mass would be contained to the kidney, they would take it (and the kidney) out, and Vic would live. Or the mass would not be contained to the kidney, and Vic would die. There is no cure for renal cell carcinoma that has spread outside the kidney—at least, there wasn't in 1995.

Well, you all know how it turned out, because Vic is still with us today. But to this day, he never passes up an opportunity to get out of doing something with the excuse "I only have just the one kidney, you know!"

Death: The Prequel

It has come to my attention that some of you don't know about Vic's death last year, so here goes:

On July 7, 2010, we were in the Apple store at the Flatiron Crossing mall taking an iPad class. we were still in the beginning of the class, learning stuff we already knew about, so Vic had been leaning forward, whispering to me about this and that and not paying much attention to the class. But the last time he leaned forward, he just kept going. Collapsed right there and hit his head on what seemed like a hard cement floor (it wasn't, really, as we found out when we went back there a month later). There were no warning signs, no symptoms, no pain, nothing. One minute we were talking; the next minute, not so much.

Fortunately, a doctor was in the store, and she took control—made sure his airway was open, talked to 911 so the paramedics would know what they were walking into, and eventually gave him mouth to mouth and CPR. The paramedics came, and although it seemed like they were there forever, it was only nine minutes from when they arrived on the scene to when they left. I think they had to shock him a couple of times in the store, but they were keeping me busy, so I didn’t see any of it.

The paramedics took him to Avista, where the ER docs worked on him for a couple of hours before they finally stabilized him. In fact, even after they stabilized him and moved him to the ICU, he coded and they had to shock him again. He was on a ventilator for two days, during which the doctors weren’t sure what he would be like when he woke up. He had been down for a long time with the paramedics (clinically dead for 20 minutes, we found out later), and no one is quite sure how much oxygen the brain gets during CPR.

But they took him off the ventilator, and he slowly but surely came out of the fog, and his physical recovery was swift. The fogginess claimed his brain for a few days, but that started wearing off too.

For the longest time (or what seemed like the longest time), the doctors weren’t sure what happened and what the real problem was, so they did a lot of tests on him—pretty much all the –grams: echocardiogram, sonogram, angiogram, candygram. (Just kidding on that last one—wanted to make sure you were paying attention.) What they finally decided was that a person with coronary artery disease, as Vic has, just builds up scar tissue in the heart over time, and this ends up weakening the heart. That can have a lot of repercussions, but in this case, it caused his heart to fall out of rhythm, which caused his blood pressure to drop, which caused him to drop. So they implanted a defibrillator, and if his heart ever behaves in this way again, the defibrillator will shock him back into rhythm.

The doctors were very clear about the fact that he shouldn’t have lived through an ordeal such as this. Every day we were in the hospital, they kept telling me a statistic that was worse than the day before. finally ended up with these two gems: 60 percent of people who crash outside a hospital don’t survive, and he was within seconds of death. SECONDS. Like, if that doctor had been more interested in her latte and iPad … well, you complete that sentence.

The best thing that happened was getting transferred to Longmont United Hospital on the Monday following “the event.” Because Longmont lets pets visit you! I had put Wags in the doggy day care on the Thursday after the event because I knew I wouldn’t be home much to take care of her. But I raced up to the ranch and got her out of prison and took her to the hospital. She climbed up into his bed, snuggled up next to him and stayed right there until I had to take her home a few hours later. It was definitely his best day in the hospital.

We came home a few days later. There was a period where they thought he would have to be transferred to an in-patient rehab hospital, and then he defied the odds and they thought just some out-patient rehab, and by the time he was discharged, the physical therapist said “Just have him take four walks a day—he doesn’t need any more PT” and the occupational therapist said “Just have him rest after every task he performs—he doesn’t need any more OT.”

In the month after the event, he got better every day. He was still tired a lot, still a little fuzzy on some memories and didn't have a great appetite, but considering what he went through, he recovered quite well. At the hospital his doctors and nurses considered him nothing short of a miracle, and I would have to agree.

I'll admit that we kind of thought we'd have a few years before another big incident, and we're more than a little ticked off that it wasn't even one year. But as my daughter would say, that's another story. ;-)

Cancer: The Prequel

First, let me say "thank you" to everyone who is leaving comments on the blog, e-mailing me and Vic, and sending messages and wall posts and "likes" via Facebook—your support is helping us stay positive and strong!

Now, on to my next blog entry. One of the trends we've seen a lot of in movies these days is the prequel, where you find out how Wolverine or Darth Vader or James T. Kirk got their start, and it occurred to me that many of you don't know how Vic's cancer got its start.

A long time ago, in a galaxy far far away—no, wait. That's been used before. ;-)

OK, so, last year, when Vic "died," the paramedics had a really hard time intubating him, and the doctors said his throat would be sore and he would be hoarse for a while. So when people started asking him earlier this year if he'd been sick because his voice was a little hoarse, we kind of chalked it up to that. But still, he was having problems in the neck area and consulted an ear, nose and throat (ENT) specialist.

First, there was the swollen area on the side of his neck. "Ah, that's a clogged spit valve," said the ENT. "Suck on some hard candies, take a million Tylenol a day and massage it, and that'll go away." So he did, and so it did.

Then there were the headaches. "Ah, you grind your teeth," said the ENT. "Wear your bite guard, and the headaches will go away." So he did, and so they did.

Then there was the trouble swallowing, and the feeling that something was lying on the back of his tongue. The ENT had no remedy for that, but he looked down Vic's throat and didn't see anything—no redness, no swelling, no growth. "Trouble swallowing" is a fairly vague symptom that could have a lot of causes, and if you watch TV medical shows (like I do), you know the old adage "when you hear hoofbeats, think horses, not zebras." So Vic waited to see if it would go away or get worse.

Then he started bleeding from his throat (like a nose bleed, but, you know, from the throat). Now me, I watch movies. I know when you bleed from the throat it can only be two things: tuberculosis and cancer. And I know tuberculosis is still with us today, but given that we aren't living in the 19th century, it seemed like a remote possibility. So when Vic got in to see the ENT, and the ENT did a laryngoscope and said, "Oh, yeah, that's cancer," I wasn't surprised.

So then the ENT took some samples and sent in some biopsies and, well, you know the rest. Anakin Skywalker became Darth Vader.

[roll credits]

So, just a peek at the week ahead:

• Monday: Meet with the chemotherapy doctor. Determine time for chemo on Wednesday. Call the radiation people. Determine when radiation can start--it might be Wednesday, but it all depends on what time the chemo starts.
• Tuesday: Appointment free, or maybe meet with the radiation people, depending on what time chemo is on Wednesday.
• Wednesday: Chemo. BOO! HISS! But on the other hand, YEA!!! Get started knocking out this beast! Maybe radiation—depending on what time the chemo is.
• Thursday: Almost certainly radiation.
• Friday: Radiation.

Thanks again for your continued support. You are wonderful family and friends.

Week 2: Late midweek update

Wow! Whoda thought I'd have two updates in the middle of the week? (I know—anyone who knows how vociferous I am.)

But today was another one of those days where kind of a lot happened, so here goes. And instead of going in chronological order and burying the lead, I'll start with the biggest news: the doctor called with the PET/CT scan results. He said it was "stage IV T2N2c." I know what you're thinking: STAGE IV! CRAP! But it sounds worse than it is. Stage IV means that the cancer is in the lymph nodes—but the doctor said they are relatively small tumors on just three lymph nodes. It has not spread down the neck and into the lungs, and that is what would have worried them the most. He also said he was confident that the chemo/radiation would get the whole thing. So all in all, it's good news.

The other big news was that Vic had his radiation planning session. We arrived, and then they immediately whisked him off into the super-secret spy shit area (I can only assume that's what it was, since they did not let me back there. How am I supposed to hold his hand from the waiting room???). Apparently in this area they use floobits and zappers and other highly technical devices.

Then they fitted him with a mask. The mask is scary, sort of Jason meets Hannibal Lecter meets Alien.

Then they planned out where they wanted to place the radiation.

Extremely precise, which is exactly what we want.

Vic said they put some tattoos on him, which he is sure gives him street cred, but they look like Xs made with Sharpies to me, so I'm not sure that's going to get very far with the Crips. Or the Bloods.

Next steps: The techs will work behind the scenes to prep the treatment. Then a physicist will review the treatment, and the treatment will start—probably around the same day as the chemo starts, which is next Wednesday, July 13. Each session (35 total) will take about 30 minutes total.

I had my scheduled meltdown from 12:23 to 12:26 p.m.

In the afternoon, the nutritionist came by and showed Vic how to use the feeding tube. He inserted a quarter of a cup of water into the feeding tube and didn't feel a thing. He said it was really weird.

Yesterday I mentioned his tooth guards and teased that I might have pictures today. Lo! Pictures!

This is the mold of Vic's teeth:

These are Vic's teeth guards:

And that's about all I have for today. We have no appointments tomorrow, so don't expect another update until next week. :-)

Emotions: Same.

Song: Oh, I have a special treat for you today. I mentioned "Squamous in the night" in yesterday's blog post but lamented the fact that we hadn't come up with any good lyrics for it. Thank goodness I have at least one superbly creative friend—the multitalented Mary Dondanville, who came up with the best lyrics to this song! Do not read this while drinking unless you want to snort milk (or tequila, or martini, or whatever you drink) through your nose.

"Squamous in the night," sung to the tune of "Strangers in the night," new lyrics by Mary Dondanville, "with apologies to Frank Sinatra, Bert Kampfert, Charles Singleton and Eddie Snyder."

Squamous in the night, it's just my feeding
Tube that's in the light. I could be reading
Pamphlets about C
But that would soon depress.

Reading about C does not enlignten
Me. I want to flee
But can't be frightened.
I can win this fight
If I can trust in MEEEEEEEE.

BRIDGE
Squamous in the night, two lonely C cells they were
Squamous in the night, devoured by T cells but then
Little did they know
They were soon aglow
Death was just a drip away
A most annoying blip away.

AND
Squamous in the night would soon be leaving.
Feeding in the night would be retrieving
Strength to win the fight
'gainst squamous in the night.

SCAT
Die you C cells, die
die die die die die
[repeat to fade out]

Many, many thanks to our guest lyricist today, Miss Mary Dondanville. Catch her down at the Casa Grande Bar and Grille on Tuesdays and Thursdays during the Early Bird Special!

Have a good weekend, everyone. Remember: extra hugs all around.

Week 2: Midweek update

Soooo much has happened already this week that I decided maybe I should post a midweek report. :-)

Yesterday (Tuesday) Vic had a minor surgery to insert a port to deliver the chemo and a feeding tube just in case he needs it someday. Here is Vic before surgery. As you can see, he looks jovial. The nurses love jovial.

Here is Vic and his surgical team. As you can see, he is quite the fashion plate. Although he was bummed that he didn't get a lead apron like his little friends.

He said the anesthetic they used in the surgery kept him half awake, in sort of a happy stupor—much like he is in the rest of his life.

Anyway, he sailed through the surgery, and the nurses loved him. He does have a way with the ladies. ;-)

Interesting side note about the feeding tube: they said that usually patients who use the feeding tube hook themselves up to an overnight bag because it just takes a long time to get a day's worth of nutrition through the tube. They call this "nocturnal feeding." So, he can't be out in the sun, and now he's going to start nocturnal feeding. What's next, he won't be able to see his reflection in a mirror?

At the end of the day, Vic went to his beloved dentist, Dr. Bob Ahern of Ahern's House of Pain.

Apparently, the radiation is really hard on your teeth, so Dr. Bob's crack staff made some impressions of Vic's teeth and then used those to make a mouth guard, like football players wear. Maybe we will get a photo of those later.

Today (Wednesday) was another busy day. It started with the PET/CT scan, which was done in a mobile unit. I'll admit that I am slightly nervous about administering a highly sophisticated, technical procedure in the back of a semi-trailer. I mean, when I was a kid, a truck came around delivering books. There were ice cream trucks. We sometimes put hay bales in the back of trucks and rode around. These seem like acceptable uses for a truck. But I'm trying to be open-minded about it.

Anyway, the PET/CT scan is supposed to give us the stage of (whisper) the cancer (end whisper) and whether it has spread. The lady who checked Vic in (Julie) said a radiologist would read it "immediately, well, not immediately, but you know, right away. I mean, sometime this afternoon." I think if I hadn't cut her off, the radiologist might not have read it until Christmas. Anyway, the radiologist reads it, writes a report, and sends it off to the doctor who ordered it. Julie said it should be there by noon, but I don't want to push things, so I'll wait until 12:04 to call. (All kidding aside, I have asked the doctor's office to get us in before the weekend to get the results of this important test, and I will do everything in my power to make that happen—but nicely, not obnoxiously, because Vic doesn't like obnoxious wives in medical shows on TV.)

After the PET/CT scan, we had chemo teaching where we found out some very exciting news: Vic's EGFR (epidermal growth factor receptor) was positive, so he will be receiving the chemo drug Erbitux. The other alternative, Cisplatin, is very hard on the kidneys, and as you all know by now, he only has just the one. And although Erbitux can be hard on the heart, they will work with Vic's cardiologist to keep a watchful eye on it.

The way I understand it, Erbitux isn't a chemotherapy at all. It's a monoclonal antibody that targets the specific cancer cells rather than spreading a wide net and hoping that it covers the cancer. And although it's hard on the heart, it's easy on the hairline and the tummy—meaning that he should not lose his hair or his lunch. (Sorry, Darlene--I know you were hoping for a contest to see who was prettier bald.) This is also good news for me, because I had volunteered to shave my head in solidarity, and noooooobody would have wanted to see that.

There are a ton of potential side effects, such as eye irriration, mouth sores, an acne-like rash, anemia, a bunch of things that end in -penia, diarrhea, and constipation (what? how can you get diarrhea and constipation?). Also, he will not be able to get pregnant during the therapy (yes, they really said that).

The chemotherapy will start on July 13. The first treatment will last about two hours, and the weekly treatments after that will last about one hour each. They are not sure how many treatments he will need. They will evaluate at the end of the radiation cycle (which is seven weeks long).

At the end of today, we went to the nephrologist (kidney doctor). He says Vic's kidney (all together now—he only has just the one!) is stable and is functioning as well as one kidney can. He seemed relieved that Vic would be on the Erbitux instead of the Cisplatin.

Still ahead this week:

• We have a radiation planning session tomorrow, where Vic will get his waffle head. We are hoping to get pictures of that!
• We also have a nutritionist coming to the house tomorrow to take the dressing off the feeding tube and show Vic how to use it and keep it clean and such.
• Wanda the Honda is getting her service tomorrow! (Yes, I know it doesn't specifically relate to the cancer, but I know you were all worried about whether we were going to be able to fit Wanda's service in with our busy schedules.)

Emotions: leveling out a bit now that some things are becoming known and scheduled.

Song: We were trying out "Squamous in the Night" and "Squamoustime, and the livin' ain't easy. Chemo's startin', radiation is high." But that's as far as we got with either of them. We're very busy, you know.

Oh, I got a new text editor for the blog, so the formatting should be better than my first two posts! I know that's important to a lot of people. :-)

Looking Ahead: Week 2

Tuesday, 7/5

• Vic will have a small surgery to put a port in his shoulder to deliver the chemo and a feeding tube in his stomach just in case he needs it later on. That's at 9 a.m. at Longmont United Hospital. Should be done by 10, out of recovery by 11, home by noon.


• I added this bullet just so none of my editor friends would pick on me for having a bulleted list with only one bullet.

Wednesday, 7/6

• 10 a.m. planning session for radiation. They take this plastic mesh thingy and mold it around your face, and then you wear it during your radiation session to keep your head from moving. They're really serious about your head not moving--even though they call this contraption "waffle head." I'm hoping for a picture of waffle head for next week's blog entry.


• 11:30 PET/CT scan. This will indicate the stage of the tumor and whether it has spread.


• 2 p.m. chemo teaching. I assume they will talk about the side effects of chemo at this session. They also do financial counseling to let you know how many millions of dollars you are going to spend for the privilege of poisoning your body and barfing for seven weeks.

Other appointments not yet scheduled:

• Dentist: Apparently radiation is really hard on your teeth. As well as every other part of your body.


• Nephrologist: Vic only has just the one kidney, you know.


• Lawyer: We need to write some people out of the will. You know who you are.


• Honda: My car needs service.

Chemo and radiation will probably start on July 12. Will keep you posted about that.

Week 1 in Review

So, week 1. Sucked. Diagnosis on Wednesday—quamous cell carcinoma at the base of the tongue. This is a cancer that is mostly caused by smoking and drinking. Vic does not smoke or drink. We are not amused. And I don't mean the royal "we." I mean Vic and me "we." (It can also be caused by reflux, which Vic did not know he had, and human papillomavirus [HPV], which is still being checked out.) The ear, nose and throat (ENT) doctor thinks we caught it early, and he does not think it will spread. He has ordered a PET/CT scan to find out what stage it's in and whether it has spread. He said there are two options: surgery, and chemo/radiation. The surgery is pretty brutal—they basically have to split your jaw open--and he said that they would only want to do this if the chemo/radiation didn't work.

Friday was a super fun day. Vic had his first consultation with the radiation people and the chemo people. Apparently, for those of you unschooled in the ways of cancer treatment, chemotherapy shrinks existing tumors and can provide a dose of poison to other cancers in the body, but it doesn't really "cure" you. Radiation is the heavy hitter, the one that takes the tumor out—the closer, if you will. So as much as it pains me to say it, radiation is like Jonathan Papelbon.

Now, here's the first snippet of conversation from the radiation consult.

Dr. Klish: If the cancer has spread, it's incurable. Blah blah blah. (She may have said more, I got stuck on "incurable.")
Patty: Hang on a sec—can we go back to that thing you said before? So are you saying that if the cancer has spread, it's incurable? (I don't know, maybe I thought if I put different emphasis on the same words, it would sound different. It really didn't.)
Dr. Klish: Ummmmmmm yes.
Patty: OK. Thanks. Great.

That said, she was quick to continue that no one thinks that the cancer has spread. Assuming it hasn't, Vic will get 35 treatments—that's one every day (M-F) for seven weeks. Radiation is not pleasant for where his cancer is. It's like getting a sunburn on the inside of his mouth. 35 times. In a row. As you can imagine, this will cause a significant amount of pain, probably starting around week 3. By week 6 or 7, he'll probably be on a narcotic-level drug like morphine. He does like morphine, but we both think the price is not really worth it.

Another significant side effect of the radiation is the problem it will cause with Vic's eating. Not only will he likely lose his taste, but his throat will be so sore that he won't be able to swallow well. Yet he needs to maintain his nutrition and his weight—because the radiation is delivered so precisely that even a small weight loss will require a readjustment of where the radiation goes. So....... yeah, he has to get a feeding tube. We're looking at it as an umbrella, though—if you carry it around, it won't rain.

This does bring up one of the good things about the treatment: because eating will be difficult, he needs to make every bite count. So he has been ordered—ORDERED—to eat butter, ice cream, cheese, meat, whole milk. None of that fat-free crap. Just lots and lots of protein. He is not supposed to get anywhere near a salad. We are *not* going to mention this to his heart doctor.

Other potential side effects include:

• Depression/anxiety (uh, I think he has that already)


• Damage to salivary glands (but on the bright side, no more drooling at night!)


• Dry mouth (we ordered a cool-mist humidifier to help with that)


• Hoarseness (but I like that sexy voice, so I don't mind this one so much)


• Thyroid issues (yes, Alice and Patty, they will monitor this given his existing thyroid issues!)


• Stiffening of the jaw and head area (he'll need to do exercises to keep them limber)


• Susceptibility to sunburn (so he has to stay out of the sun—he thought this would get him out of the yardwork, but I told him the trees can be watered at midnight as easily as they can be at noon!)


• Sunburn-like reaction to the treatment (he had to get an electric razor--apparently, you're not supposed to use blades on a sunburn!)


• Fatigue (he thinks this will get him out of the housework--ha!)


• Lymphedema (yeah, I don't know what that is either)


• Hearing impairment (selective, I'm sure: "Honey, can you take out the garbage?" "What?")


• Facial hair loss (fortunately, his beard is so patchy this will not be noticed)

Next stop: chemo consult. Awesome news here. And by "awesome," I mean "not so awesome."

There are two drugs he can take depending on whether his EGFR (which either stands for "Egyptian ghost fighting regime" or "epidermal growth factor receptor") is positive or negative.

• If it's negative, he takes a drug called Cisplatin. The oncologist said that this drug is hard on the kidneys. And as Vic is so fond of reminding anyone who will listen, he only has just the one.


• If it's positive, he gets to take a drug called Erbitux, which the doctor says is better for the kidneys, and it may not cause hair loss and nausea. Yea! But when I looked it up online, it says "may have an increased risk of cardiopulmonary arrest and/or sudden death." Boo! We've been that route before. We're not fond of it.

We will find out which one he has to take next week.

Emotional state, week 1: Up, down, sideways, positive, negative, angry, in denial, sad, scared, anxious, ready to get started, not ready to get started.

Song: Squamous River, sung to the tune of Swanee River. New lyrics by Victor Love.

Squamous, how I hate ya how I hate ya, my dear old squamous.
I'd give the world to see, a shrinking tongue and Waggy there for me I know that...
Pain is waitin' for me waitin' for me, 'cause of my squamous.
The folks at Hope will see me no more, when I can shut that squamous door.

Stay tuned for "Looking Ahead: Week 2"!

My first post

On June 29, 2011, my husband, Vic, received a diagnosis of cancer. Seriously? Cancer? Cancer is such an a-hole!

Anyway, some people wanted to be kept informed, so I started up this little blog, which I'm hoping will fall into the category of infotainment.

P.S. Sorry the title of the blog is so lame--it's the best I can do at this point. ;-)