Radiation Day 35: Let the Healing Begin!

Today was radiation day 35. The last day. No more treatments. Not one. Uh-uh. Nope. Zero. Zilch. Nada. And not a moment too soon, because poor Vic—still trying to be as positive as ever—has been feeling worse than ever these past couple of days. So while this next week may still suck, at least nothing more will be adding to the suckitude.

So after Vic's LAST treatment (did I mention today was the last day?) and doctor visit, he was invited to "ring the bell."

He's known about the bell-ringing ceremony for quite some time, so he had been thinking about what he wanted to do. He rang the bell loud and clear. Paused for dramatic effect. He rang the bell again. Pause. He rang the bell again. It was very cinematic, and afterward I cursed myself for not bring the Flip video. Will you settle for a picture?

The staff all applauded resoundingly and said he had done an excellent job with the bell ringing, then posed with him for a picture.

Vic does have a way with the ladies, and these ladies were big fans. They were all super proud of him and said he had come throug the whole experience amazingly.

This lady is pretty proud of him too:


 I couldn't ask for a better husband—or a better role model for how to handle adversity. :-)

So, just a reminder as to next steps:

• Potentially feel like crap for a week.
• See radiation oncologist next week for a follow-up.
• See NotChemo oncologist in two weeks for a follow-up.
• Start to feel better. Eat food. Watch an entire movie without napping.
• Get PET scan to see how effective the treatment was in three months.

And of course, I'll keep blogging—at least for the next few weeks of recovery and follow-up appointments. I know I've said it before, but your support, prayers, thoughts, healing energy, laughs, cards, letters and gifts made a huge difference in our ability to get through this with a positive attitude. Thanks for being our village.

The Q&A

OK, our interactive topic for this week (thanks for all your Mad Libs last week!) is a Q&A. Do you have any questions that haven't been answered on the blog? On Facebook? In person? On e-mail? By smoke signals? If so, feel free to send them to me at thegrammarqueen@msn.com, and I'll post 'em here for all to see. No topic is off limits—although some questions might be deemed ... unsuitable for a public reply. For example, questions about poop. (Yes, people ask about poop.) In cases such as that, I'll respond personally. I'm on vacation until August 31 (can I get a WOO and a HOO?!!), so I have plenty of time.

Let the interrogation begin!

NotChemo Day 7: THE END OF ERBITUX!

Yesterday was a great day—the end of the dreaded Erbitux! Knowing that the end of treatment is near, many of you have been asking what our next steps are, so I asked the doctors yesterday, and this is what they said:

• No more NotChemo
• A couple more saline drip hydrations, as needed
• Four more radiations
• Expect a bad week the week after treatment stops (because the medicine doesn't stop, so he might get a little worse still) :-(
• Expect things to start recovering slowly after that—full recovery could take up to a year. He will continue on the feeding tube until food and water starts to actually taste good.
• Follow up with oncologist in a few weeks
• Follow-up PET scan in three months--this is where we will find out how well the treatment did its job. You have to wait a little while because the radiation keeps working after the treatment stops, and if you do it too soon, it might show cancer that wouldn't be there even a month or two later.
• Wait
• Wait
• Wait (and so on)

So the waiting won't be much fun—either waiting for the recovery to really get going or waiting for the PET scan—but at least he shouldn't get any worse!

Vic's oncologist is very pleased with Vic's progress over these seven weeks. As the doctor said, "You still have a little smile on your face and a little twinkle in your eye—and that's something we don't always see at this point." It made me so happy to hear that! This is Vic with his oncologist:

The doctor asked that we not put his name in the blog because he didn't want the FBI to find him. I'm sure their facial recognition program won't work on the blog.

And here is Bert, another of Vic's stellar nurses. She has been taking such good care of him during his NotChemo—all the nurses have, of course!

And here we are just before the final treatment:

He got some excellent stickers for this last treatment (have I mentioned that this was his last treatment?):

And then he fell asleep and I wrote the blog! All in all, a good day.

The Cancer Code: Like Morse Code, but Completely Different

So, as I reported last week, Vic is getting pretty hoarse. If a butterfly flaps its wings between him and my ears, I can't hear what he says. So we've come up with a code. It goes something like this:

"Good morning, Love. Did you have a nice sleep?"

"Oh, good. I'm so glad. Can I get you anything?"

"Are you sure? Well, OK. So, how are you feeling today?"

"Oh, dear. Maybe you need to hydrate more."

"Or perhaps you are not feeding enough. I've been saying that all along, that you are not—"

(After this, we do not speak for a while. Like, hours. But after awhile, I have to speak. I am hardwired that way.)

"Oh, guess what? I was doing this row of beading, and then I got all the way through it and realized that at the beginning, I was supposed to use a teal bead but I used an aqua bead instead and I had to take it all out and do it over."

Then Wags decided she had to get into it, so here is some Wags code:

"I love you, Dad!"

"I love you, Da—does somebody have food?"

"I love you, Dad. May I please have some scratches?"

"I love you, Dad, but would you please ask Mom to get that camera off me? You know I hate having my picture taken."

"I said, would you please get that camera off me?"

"I love you, Mom—are you holding a ball?"

So off we go to play ball, and finally, it's time for bed and one last code between husband and wife:

"I love you, Sweetie."

NotChemo Day 6, Radiation Days 24-28: The End in Sight

This was a good week.

Read that again, because I'm guessing that most people, at this point in their treatment, can't say this. But this was a good week.

When we last visited our intrepid hero, he was a little down in the dumps. Symptom had stacked upon symptom, and for the millionth time, we wondered whether the cure was worse than the disease.

But on the way to NotChemo this week, he said "Actually, I'm surprised. I thought I would feel worse than this."

Nothing stops you in your tracks quite like an unexpected turn of phrase.

This is a guy who has to "eat" through a feeding tube, "drink" via a saline drip, live with pain described as a 5 (with 1 being no pain and 10 being the worst pain imaginable) pretty much all the time, cough up mucous so thick that you can hear "Anticipation" playing in the background, take a thousand different pills for each of these various symptoms and then sleep somewhere in the neighborhood of 16 hours a day.

"I thought I would feel worse than this."

That's a guy I want to be married to. Oh, thank goodness. I am. :-)

So really, that's about the only update for the week. The doctor wasn't in this week, so I have nothing to report from the doctor. The lady who puts stickers on the NotChemo bag wasn't in this week, so I have no pictures of fun stickers. He slept through the entire treatment—which you've all seen before, so no need to show that again. He has no new symptoms, he doesn't feel any worse than last week, and nothing really changed.

Except his attitude, which inexplicably took a turn for the better this week, just when you'd think he couldn't take any more.

"I thought I would feel worse than this."

Anniversary Mad Lib Part 3: Completed Mad Libs

MY MAD LIB:

Once upon a time, there was a lovely lady and a handsome man, each traveling along a different path. One day, their paths crossed. He loved her eyes, and she loved his smile—but most of all, she loved his huge heart. They liked to take long walks by the lake and hold hands in the moonlight. One day, the handsome man asked the lovely lady to marry him, and she said yes! They got married in their friends' back yard. Eventually they added a little bundle of joy to their household, a dog named Wags. And the three of them are living truly, madly, happily ever after.

YOUR MAD LIBS:

Seth
Once upon a time, there was a loquacious lady and a hirsute man, each traveling along a different path. One day, their paths crossed. He loved her boondoggles, and she loved his googleplex—but most of all, she loved his huge poop. They liked to flatulate by the lake and endure radiation in the moonlight. One day, the hirsute man asked the loquacious lady to marry him, and she said "Good gravy!" They got married in the Well of the Souls. Eventually they added a little bundle of joy to their household, a push-me-pull-you named Scully. And the three of them are living noisily, unattractively, uniquely ever after.

Seth says: You can't have a Mad Lib without poop or flatulation when you have kids.
Patty says: You gave us your beloved pet name, Scully. I am touched. :-)

Carolyn
Once upon a time, there was a limited liability lady and a limited partnership man, each traveling along a different path. One day, their paths crossed. He loved her assets, and she loved his balance sheet—but most of all, she loved his huge portfolio. They liked to define contributions by the lake and swap unsecured loans in the moonlight. One day, the limited partnership man asked the limited liability lady to marry him, and she said "At Last, My Asset Allocation has come along!" They got married at Charles Schwab. Eventually they added a little bundle of joy to their household, a bullnbear named Annuity. And the three of them are living consolidated, compounded and diversified ever after.

Says Carolyn: No, really, I haven’t been doing too much work for NEFE [the National Endowment for Financial Education] lately, I PROMISE…
Says Patty: I really do like his huge portfolio, if you know what I mean.

Colleen
Once upon a time, there was a handy lady and a ropey man, each traveling along a different path. One day, their paths crossed. He loved her cows, and she loved his horse—but most of all, she loved his huge calf. They liked to rope by the lake and dally in the moonlight. One day, the ropey man asked the handy lady to marry him, and she said "Yeehaw!" They got married at a rodeo arena. Eventually they added a little bundle of joy to their household, a goat named Twister. And the three of them are living skillfully, awkwardly, carefully ever after.

(Note: Colleen's Mad Lib is the result of a smackdown by Seth, who felt it was ... inappropriate ... of her to harsh his Mad Lib without posting her own words. Says Colleen: This is all I got on the hayseed of the world." Says Patty: "I'm glad cow patties didn't make the list—but I sure do like 'Yeehaw!'")

I'll continue to post results here for anyone who wants to send me theirs. (And Abby, if you want me to post yours, I'm going to need more than just "poop" and "boob," although those are two perfectly wonderful Mad Libs words. ;-) And thank you for sending us the Mad Libs—they are definitely taking our minds off of "other things," if only for a little while at a time.)

Anniversary Mad Lib Part 2: The Mad Lib

OK, so here's the Mad Lib along with the words that go with the blanks. Anybody who did words, if you think your Mad Lib came out particularly funny, send me your words, and I'll post your completed Mad Lib! I already have one set of words, and quite frankly, I think it came out extremely funny!

Once upon a time, there was a/an __________ [adjective 1] lady and a/an __________ [adjective 2] man, each traveling along a different path. One day, their paths crossed. He loved her __________ [plural noun] , and she loved his __________ [singular noun 1]—but most of all, she loved his huge __________ [singular noun 2] . They liked to __________ [verb 1] by the lake and __________ [verb 2] in the moonlight. One day, the __________ [adjective 2, repeat] man asked the __________ [adjective 1, repeat] lady to marry him, and she said __________ [exclamation]! They got married in/at __________ [place]. Eventually they added a little bundle of joy to their household, a/an __________ [animal] named __________ [name of a pet]. And the three of them are living __________, __________, __________ [up to three adverbs] ever after.

Anniversary Mad Lib Part 1: The Word List

So after our Mad Libs fun, I thought I would create a Mad Lib for those of you who like to play along with the home game. First, a word list:

adjective 1 ___________________
adjective 2 ___________________
plural noun ___________________
singular noun 1 ___________________
singular noun 2 ___________________
verb 1 ___________________
verb 2 ___________________
exclamation ___________________
place ___________________
animal ___________________
name of a pet ___________________
up to three adverbs ___________________, ___________________, ___________________

OK, now, do your words! I'll post the Mad Lib it goes with tomorrow. If you feel like your Mad Lib came out particularly funny, send me your words, and I'll post the final product when I post mine.

GO!

Anniversary Mad Libs

Yesterday was our 23rd wedding anniversary.

They say when you're married long enough, you start to look like your spouse. We often talk about how we share a brain. But who knew it would come to this:

Patty's card from Vic:

Vic's card from Patty:

Anyway, you know us. Party animals. So we planned an event worthy of a 23rd anniversary: Mad Libs! It all started out innocently enough:

But then someone else had to get involved:

And it kind of went downhill from there:

But all in all, we had a great day.

NotChemo Day 5, Radiation Days 19-23: Dog Days

Hello, friends and family,

Well, another week has gone by, and things are still movin' and shakin' in the Love house. This week has basically been a continuation of last week: symptoms piled on top of symptoms, treatments piled on top of treatments. I, of course, think he should to everything his doctors and nurses tell him to. And as we all know, I am always right. (Except when I'm not.) He thinks he should only do things that make sense to him, things that will kill him if he doesn't do them. (And anyone out there who has ever been sick, you know that's what you want to do as well.) So when we go to the doctor (as opposed to him going by himself), I become that horrible know-it-all tattletale we all know from elementary school. It goes like this:

Vic, proudly: I am up to five cans a day.
Patty, sternly: He's supposed to have six.

Vic, silent: [he's silent]
Patty, not silent: His radiation nurse suggested a saline drip.
Patty, not silent: His throat hurts.
Patty, not silent: He has mucous.
Patty, not silent: His tummy hurts after feeding.

You all know me. You know what it would be like to be married to me. So at this point in the blog, I'd like to insert a moment of silence for you all to offer a little pity/sympathy prayer to Vic. ;-)

[moment of silence]

Anyway, in the past, my issue has mostly been about feeding. This week it was about hydration. So the oncologist ordered a saline drip on Wednesday and Friday, and when the nurse came over to schedule it, Vic said, "I don't think I really need that."

Patty, not silent: Yes, you do.
Vic, quietly: I can just "drink" more.
Patty, superiorly: But you won't. You'll just leave bottles of water all over the house with one sip taken out of them and think you're drinking more.
Vic, quietly angry: Fine. Whatever.
Patty, more superiorly: Look, maybe you will drink more, and if that's the case, you can call and cancel the drip. But if you don't schedule it, and you don't drink more, then you won't be able to get in.
Vic, angrily angry: Then I can schedule one on Monday.
Patty, the know-it-all: And be miserable all weekend? Fine. Whatever. You're the patient, do whatever you want.
Nurse: You know, this is the issue that families fight about more than anything else.

A few minutes later, as I was waiting for Vic to get out of the bathroom to go to his radiation, the oncologist walked by and said, "You know, this is a really hard treatment, and it just rips families apart. You'll be OK." And a half-hour later, the radiation doctor said, "Have we talked about spousal tension?" And we're all, "WE ARE NOT TENSE!" ;-)

So I've tried to back off a little since Wednesday. He thinks I may be bugging him one less time a day, but I am certain it is two less times. Because that's just the kind of wife I am.

So, the pictures for this week (sorry they're not very good—I forgot to have Vic bring his camera, so these are from my phone.

First, his NotChemo bag for the week: sea lions and fish. I suppose it's stupid to get so excited to see what stickers the nurses put on each day, but I still do.

And the patient, sleeping through his treatment. Probably the best way to get through it. :-)

I do want to add a note about one other challenge we faced this week: the death of my former boss, Mark Brand. Mark was my first boss out of college, took a chance on me when no one else would. We worked together for five years, during which he mentored me and allowed me to find my own way and eventually spread my wings and fly away. Vic and I remained close to him and his family, although as with many relationships, it had turned into a Facebook/e-mail/holiday letter thing. But perhaps only a minute after I sent out the notice that Vic had been diagnosed with cancer, Mark was on the phone to find out how we were and to give us an insider's view of cancer—for that is what eventually took Mark from his friends and family. That's what kind of friend he was—there whenever you needed him and at a moment's notice. He sounded fine that day, only a month ago, so it came as quite a shock that he has been taken to the hospital and was in critical condition and as another shock when he slipped further and further away. And even when you know death is coming, it was yet another shock when we received the e-mail that he had passed away.

So I am inserting a second moment of silence to honor my friend, Mark Brand.

Mark J. Brand, December 29, 1949–August 9, 2011

Our hearts go out to his lovely wife, Maxine; his beautiful daughters Rachel and Ali (and Ali's husband Noam, of course); and his made-of-steel mother, Evelyn; his brother David, whom Mark cherished, and David's family; as well as the rest of his family, friends and students.

Finding Inspiration, Part 2

Vic does not read the blog before it gets published, and the only way he knows what's in it is when I tell him. Which means that sometimes I'm surprised by his reaction to my posts. Like this morning, when I told him about my "inspiration" blog post. Out of the blue, he says, "Bill DeMoulin is my inspiration." Since most of the blog is from my point of view, I thought I'd share a little something from Vic's point of view. So now I have the honor of telling you about Bill.

Bill was my sister's father-in-law, but we adopted him as our father-in-law because, well, the guy was just an everydad. He had a way of making you feel connected to him. He was generous with his love and his time—and not just to his family. He was self-deprecating and quick to smile, and he had a great laugh. He was interested in you and what you were doing. He was kind. To sum it up, Bill DeMoulin was simply a great man, and I doubt you'd find many who would disagree with that—including the lawyers he opposed in court and the offenders he sentenced as a judge. Well, maybe a few of those.

That alone makes Bill an inspiration, but what keeps Vic going every day was the way Bill faced his own cancer. Bill was diagnosed with non-Hodgkin's lymphoma, a disease that eventually took his life two-and-a-half years ago. But that cancer barely slowed him down. He and his wife, the lovely Ginger (more about her later), made the most of every moment they had together. Here they are at a potluck murder mystery:



Bill continued to show up for family functions, and although sometimes you could tell he was tired or didn't feel good, he never said a word. Never complained, never whined, never moaned. "He was just a stalwart guy," Vic said this morning.

So when Vic starts to feel like he can't handle it anymore, when he feels weak, when he just wants to curl up into a little ball—he thinks of Bill and finds the strength to face another day.

Another way we use Bill as our role model is his marriage to Ginger, seen here on their wedding day:



Bill and Ginger—they just loved each other. They cared for each other. They showed up for the marriage every day. In pictures, they are always touching. And where Bill was strength, Ginger is grace. Last year, when Vic "died," she was with me every step of the way, e-mailing me, telling me it was going to be OK, offering any assistance she could provide. Because she knew how I was feeling under the threat of losing my other half (my better half, really).

And she is still grace today, sending Vic a card every week to let him know she is thinking of him, praying for him, encouraging him to be strong.

To be like Bill.

Finding Inspiration

Vic and I were taking one of our new customary evening walks. The ones we started because I was tired of my doctor yelling at me to get more exercise. :-)

I have been quite impressed by his positive attitude over the past several weeks, and I wondered what he sees when he's in the dark and the demons come. Did he cry into his pillow at night? Or did he just want to scream? Or do demons not come to visit him.

First, he scoffed at the idea that he would cry into his pillow. I get that.

But then he said, "Mostly I just whine 'why me?'" And then he proceeded to whine, in a very whiny voice, "Why me? I already had cancer once. I died last year. Why did I get cancer again? And why this kind of cancer? I don't smoke, I don't drink. I've led a pretty good life." He continued along this vein throughout the rest of our walk, throwing in some whiny moans every now and then for effect.

Now on the one hand, it was very sad—because yeah, why? It's not that I'd wish it on someone else—well, there was that one guy who cut me off in traffic the other day—but I think we've been through enough for a while. No need to pile it on.

But on the other hand, it was hilarious because he was using the most hilarious voice and saying the most hilarious things. It just showed once again his positive attitude and spirit—the qualities that will get him through the home stretch.

But one of the best things about it was that it reminded me of one of my favorite quotes. Well, two, actually, now that I think about it.

The first one is from incomparable tennis legend Arthur Ashe. Arthur Ashe was a true gentleman of the game, and he didn't need a big serve or an outsized attitude to win Wimbledon, the U.S. Open and the Australian Open. His career was cut short by a heart attack—but his life was cut short by the HIV he contracted during a blood transfusion. After he went public about his condition, if I remember correctly, a reporter asked him something like, "Do you ever wonder why it happened to you? And Arthur Ashe replied, "If I were to say 'God, why me?' about the bad things, then I should have said 'God, why me?' about the good things that happened in my life."

And we have some good things in our lives. We have each other. We have our families and friends. We have food to eat, and a roof over our heads, and heat in the winter. I have my stitching stash. And of course, we have Princess Wagglebutt.

So why we may still ask "Why me/why him" when we can't sleep at night, we don't dwell on it.

The second quote will probably be familiar to those of you who have known me for a long time, because I tend to trot it out several times a year under certain circumstances. This one is from Dr. Martin Luther King, who said, "The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy."

I'm sure he was referring to bigger issues—societal, political, global challenges—but I think it can be applied to personal challenges as well.

And so I leave you with this: My Vic is 20 feet tall. And my greatest inspiration.

NotChemo Day 4, Radiation Days 14-18: The Hump

We are officially over the hump—this week marked half (or more) of NotChemo treatments and more than half of radiation treatments. So that's three-and-a-half weeks until the end of treatment. That seems ... doable. (Of course it seems doable to me. I'm not having the treatments.)

But what could be more fitting for jumping over the hump than frogs?!

Of course, Vic was not doing any jumping during NotChemo:

He was just listening to some tunes and zoning out under his healing energy quilt!

So how is he doing? Well, that's a good question. Physically, he's doing about as well as can be expected. Now that he's able to get down five cans of "food" a day, he's stopped losing weight. Yea! But the rest of his symptoms are creeping up. His throat is sorer. His mouth is drier. He is more fatigued. Don't get me started on the mucous. And every time he goes to the radiation, it's like adding insult to injury. "Oh, you're able to get five cans of food down—good for you. But you know, you still need to eat or you'll lose the muscle memory and won't be able to eat when food starts to taste good again." "Oh, your blood pressure is down—you're dehydrated. Yes, water tastes like crap, but you need more. Drink up!" "You didn't get enough rest last week." "You're getting too much rest this week."

Which brings me to the emotional. Clearly, he still has his sense of humor:

He's gotten a couple of cards with a dog wearing the "cone of shame," and he decided that he should wear it. He does look pathetic, doesn't he?

At the end of the cartoon panel, the dog falls off the curb and can't get up because of his cone, so Vic decided to re-create that here:

Naturally, Wags was not going to let him do that all by himself:

But he is a little down in the dumps. All this "You have to do this" and "Don't do that" from the doctors coupled with my constant "Did you eat? Are you drinking? Are you resting? Do you need anything?" gets old fast—especially when, let's face it, you just don't feel good, dammit! Normally when you're sick, you kind of get to do whatever you want. But there are rules to having cancer, and quite frankly, that's just not fair.

As a matter of fact, I've had it up to here with "not fair" this week.

So I'll close for now. But stay tuned—inspiration is just around the corner.