Say What?

Some cancer survivors use the phrase “cancer sucks”. I don’t. I just don’t care for the phrase: [insert random thing I hate here] sucks. First of all, I just find it kind of crass. It begs the question: Sucks what? Uh-huh. We all know what. Second, it’s just not a terribly clever thing to say. It reminds me of some sullen teenage boy complaining about having homework, or being grounded, or finding out his favorite band is breaking up: That sucks! “Gee, Biff, that was mighty profound, and craftily worded—did you have to use a thesaurus to come up with such an eloquent turn of phrase?” Thirdly, it just sounds so daggone bitter. While I realize that some people like to wallow in their bitterness, I try really hard not to be bitter. Not only is bitter not healthy, most importantly, bitter’s not FUNNY. Have you ever met a bitter person and come away thinking, “I really had a good time hanging out with Mrs Bitterbuns—her bitterness is both refreshing and uplifting.” No. You’re more likely to have thought, “Man! I thought I’d NEVER get away from Old Bitterbuns—she totally saps my will to live!”

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I’m 36, but the skin on my face has never progressed past the age of 15. When I was 15, I thought that one day my face would no longer break out—maybe when I was 20. And to that my skin has said, “Ha!” But, the one good thing about chemo is that it has cleared up my skin. That’s a blessing because, good grief, like I need to be bald AND have a bad complexion! When you have no hair, all your facial features become more prominent—whether they be the permanent kind, like your eyes, or the kind that erupt over night. Unfortunately, here I am about 2-1/2 weeks out of chemo and my face is apparently feeling like its old self because it’s breaking out left and right. I’m thinking, “Hey! This isn’t cool, I’m still bald!” While I’m not having a Brady Bunchesque pimple-before-the-prom type crisis, neither am I terribly happy about it. Why does that have to be the first thing that gets back to normal? Why couldn’t it be my body’s ability to regulate its temperature, or my taste bud function? Why can’t my face put its energy into rebuilding my eyebrows & eyelashes faster so I don’t have to keep trying to Jedi Mind-Trick everyone into thinking I still have a full set?

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If I hear the question “do you feel up to it?’ one more time, I’m going to poke myself in the eye with a spork. The answer is “Yes, I feel up to anything—except being asked for the millionth time if I feel up to it.” I appreciate the concern, but can we please from now on just ask regular old questions without prefacing them with “do you feel up to…”? Other than needing extra sleep, I’m feeling great. You won’t offend me by asking me to do something normal. In fact, I’m a big fan of normal these days. And if for some reason I don’t “feel up to” doing whatever it is, I’ll tell you so.

I say this not to make anyone feel badly, but because I know that folks don’t always know what to say and do. Sometimes I think it’s more important to know what *not* to say than it is to know what to say. For example, it’s in poor taste when upon meeting someone with cancer you spout, “Oh! My Aunt DIED of cancer.” (Yes, that really was said to me—fortunately I have thick skin and think myself immortal.) You don’t need to say anything special—just be normal. If there’s one thing we cancer patients crave because we lack, it’s normalcy. Sometimes we also crave nacho cheese.

MRI & I

I have a breast MRI scheduled for September 4th. It’s similar to a regular MRI in that they put you on a table and slide you into a tunnel. It’s different in that you’re lying face down with your boobs hanging down into their own little compartment, and your arms outstretched in front of you–one with an IV in it, one holding a thing to squeeze if you need something—in a Superman pose. You are not allowed to move—for an hour.

They give you your choice of music to listen to over headphones while you’re in this thing. Doesn’t that sound nice? Well, yeah, you’d think so wouldn’t you? The reality is that the MRI makes this horrible racket and you can barely hear the music. Imagine a cross between an alarm clock and the Emergency Broadcast System…now throw in your music, but not loud enough to actually hear well. If you want the full effect of *my* previous experience, make sure that your nose is running. Wait! Don’t sniff too hard—no moving allowed, remember?

I capped it all off by having a coughing fit. (Of course I did—it’s me) I squeezed the call thing and the technician came through my headset with “Are you okay?” To which I replied *HACK* COUGH* *GASP* *COUGH* Can I get a drink?* COUGH* SNORT*. They pulled me out, gave me a cup of water—but wouldn’t let me raise myself up enough (“Keep your chest down!”) to drink without choking. Have you ever tried to drink from a cup while laying on your belly? Of course not, because it doesn’t work! I thought, “Great! Just what I need—to flunk my MRI!” Fortunately, they do this thing in small increments, so I only had to repeat the last few minutes and not the whole hour.

As you can imagine, I’m just quaking with eager anticipation over the thought of doing this again.

Hot

I’m feeling pretty good here on the 10th day after the end of chemo. Yesterday I worked at the dairy making fresh mozzarella and string cheese—and let me tell you that’s one hot job when it’s 96 degrees outside. Then I came home and we worked in the garden planting the fall veggies for a couple of hours. More hot. I somehow made my knee angry, got bit by a horse fly, and bopped on the back by Hubster who nobly killed the horse fly when it came back for seconds. (Though he darn near knocked the wind out of me in the process)You would have thought that I’d have slept through anything after all that, but I woke up from hot flashes at least twice. This morning I got up late and had a very hard time waking up, even after a liberal application of coffee to my brain. I think I just don’t bounce back as easily right now. Of course my body is in the process of trying to rebuild from the chemo and it’s probably thinkin’ “Like I need one more thing to do—dang! Why can’t you lay up on your butt like a normal cancer patient?”

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I know you’re all on the edge of your seat waiting to hear what I canned today. Well, it’s not anything nearly as exotic as watermelon pickles. Today’s canning project was grape jelly. Mmmmm. It’s exciting for me because this is the first year we’ve have enough grapes to make jelly. In fact, I only picked about half the grapes because the other half of them has been taken over by hungry hornets. I like jelly, but not enough to risk getting in a fight with them—I know I’d lose that one. Even a bee suit (and I do have one) wouldn’t save me! Those things are hardcore. I’m hoping that maybe they’ll go home after dark and I can pick those grapes—if not, I guess I’ll just have to be satisfied with the eight pints of jelly from the first batch. 

Hair on Fire

Dr Birhiray prescribed some stuff that was supposed to help combat the hot flashes I’d been having. Hot flashes, for those of you who haven’t experienced them, involve a sudden spike in body temperature, and profuse sweating giving you the sensation of having someone light your hair on fire. The major difference between regular hot flashes, and those induced by chemo is that with regular hot flashes you actually have hair to mistakenly think is aflame.Anyway, this stuff he prescribed seemed to be my friend at first…the hot flashes weren’t waking me up all night long. However, as the week progressed, I noticed some side effects. The most significant thing was a shooting pain in my head, not unlike being repeatedly hit upside the cranium with a hammer. I thought, “I don’t need this stuff! If I want to feel like this all I need to do is talk to Mini Me about keeping her room clean.”

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Attempting to breathe water is not a fun thing to do. I’m trying to drink my daily allotment of water, and I think I just tipped my glass back and poured a big ol’ swig straight down into my lungs. This was followed by a huge gasping, choking fit. Good grief! I’ve got to be the only person alive who can nearly drown while typing a blog entry.

Processing

You’re probably all wondering where I’ve been.

Well, I’ve been processing. I’ve been mentally processing the information from my meeting with Dr Schmidt last Thursday, as well as processing items that I’m canning here at home.

First, about the medical stuff…I knew I was going to require another surgery, specifically a mastectomy on the left side. While that doesn’t thrill me, I’d pretty much dealt with it. Originally, Dr Schmidt had said his plan would be to do immediate reconstruction. That, however, was before my last surgery. Because he couldn’t get clear margins, and because of that second cancer spot on the opposite side of the breast, he now wants me to do radiation following the mastectomy. That means I can’t have immediate reconstruction. Just call me The Unaboober. Go ahead and laugh, you know it’s funny.

Also, because irradiated skin and tissue don’t stretch well, I won’t be able to have the relatively quick & easy procedure where a little inflatable tissue expander is placed under the chest muscle and gradually stretched to accommodate an implant. Oh no…that would be way to simple now wouldn’t it? You know what I always say: If it’s worth doing, it’s worth going over the top with. So, in keeping with that motto (what was I thinking when I picked that one, anyway?) I’ll now get to have a reconstruction procedure which involves taking muscle, fat and skin from my back, detaching it on one end, wrapping it around and attaching it to my chest to form a nice little built-in purse to hold an implant. Doesn’t that sound like fun? Now you understand why it’s taken me the better part of a week to process all that.

Okay, so on to the canning. I got this watermelon that was about the size of a school bus the other day, and decided to try making watermelon rind pickles. It was either that or add on to the house with the leftover rind, but I couldn’t figure out how I was going to get paint to stick to the inside of it. The thought of white walls was too much to bear, so I made pickles instead. I’m not a big fan of food coloring, but after the pickles sat overnight they looked more like pickled compost than anything edible, so I added green to try to make them look a little more like food. Now they look like pickled leprechauns.
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If you read my post of August 8th about wanting to get my head signed by Tony Dungy (and if you haven’t, you need to go back and read it—consider it prerequisite to reading the next couple of paragraphs) you know that I was unsuccessful in my quest. However, my good friend Susie—famous for her role in the Rumble at the Relay (see my entry from April 12th)—appeared on my doorstep Friday afternoon fresh from Colts Camp with a copy of Dungy’s book signed as follows:

To Moody,
Keep your eyes on the Lord
Romans 8:28
Tony Dungy

She had kept Mini Me for me while I had my appointment with Dr Schmidt, so when I picked Mini Me up Thursday night I told Susie about all my new information. She thought I could use a little pick-me-up, so she got the book and had it signed. Does Susie rock or what?

Last Chemo

Well, here I am at chemo…the LAST chemo. Woo hoo! And, double good, it only took one stick to draw blood and one stick to put my IV in!

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I’ve been busted.

Dr Birhiray has apparently been reading my blog. This just cracks me up. I’m amazed the man even has time. I’m not sure who he’s signing in as, because he defintely has not registered as himself…maybe it’s really him who has signed in under a bunch of different aliases trying to win the prize. (Maybe he thought it was one of those Lurcher dogs) However, he made sure I knew that he had read that I said I liked him because he laughs a lot.

Deep Thoughts

I spent 2 hours at the orthodontist Friday, at the end of which I found out that they’re ready to “begin treatment”. She’s been going to the orthodontist for 2-1/2 years now, so what that really means is that they’re ready to start preparing her for braces. I thought to myself, “Great! I’ve had all those bags of money sitting around, taking up space, now I can just bring them along to the next appointment. I was trying to figure out what I was going to do with those! What a blessing!”

Believe it or not, I spent some of that wait time not only thinking, but reflecting. I decided to jot down things I’ve learned from this whole cancer experience so that I could share some of them with you guys. By the way, mini Post-its and felt tip pens are not, I repeat, not the best tools for writing down such things. But, it was either that or my hand.

*I’ve learned to appreciate normal. The ability to do the things I’d do during the course of everyday life. Tasting. Having nose hairs–do you have any idea how much your nose runs without those things? Not having to schedule things based on whether it’s “good week” or “bad week”. Being pain-free. I’m 36 for crying out loud! Yet, it seems to me that lately a lot of my time has been spent living the life of someone much older with all the bone aching, doctor visiting, and pill popping. I relish normal these days. Even when I have to wait 2 hours at the orthodontist—hey at least I feel like being there!

*When you’re bald, scarves make you look like a cancer patient. Cute hats are better. Just plain bald shocks people, but seems to actually make them more at ease—as long as you have a good attitude and a smile—after the initial shock wears off. Plain bald, especially with the right accessories, says, “Hey—I’ve got cancer, but you know what? I’m still very much alive and kicking!”

*Most people who go through this sort of thing say that they learned that they’re stronger than they thought. In my case, I’ve learned that I’m not as strong as I thought. I’ve always been stubborn and had the attitude that I could do just about anything (except algebra) through sheer willpower. However, this time I was in over my head. Yeah, I’ve made it this far, but at my lowest points it was not by any strength of my own. In fact, being Miss Tough Stubborn Pants worked to my disadvantage, I think. It’s very difficult to go from having the mindset that you can do whatever you set your mind to do, to literally not being able to do the simplest thing. What a tragic day it is when you find out that your ego was full of crap, and you’ve been woefully misled all these years. The talents and abilities that I have are given to me by God to use, but I don’t own them.
 

Colts Camp

Welcome to a very long post that has absolutely nothing to do with cancer. If you only visit here because of your keen interest in medical junk, move along. If, on the other hand, you just like reading my stories, please continue.*************************************

This has got to be my favorite bald picture yet.

Because Hubster is a Rose grad, we got an invitation to a dinner during Colts training camp. I thought it might be fun. Hubster, who has no interest in football in general, and only mild interest in the Colts—which is more by association with all the Colts freaks he works with than by any effort on his part—couldn’t go because of a church board meeting. However, we didn’t figure that out until we’d already sent in our RSVP. So, I ended up taking Hubster’s boss’s wife, who is a HUGE Colts fan. She is, in fact well past the point of normal fandom. Though we told everyone we were going to “dinner with the Colts” we didn’t know if anyone would be there other than Bill Polian, who was speaking.

Now, if you know me, you know that there aren’t too many famous people that I would really get excited about meeting. The only one I’ve ever gone out of my way to go meet was Cowboy Bob when he was at the Indiana State Museum. Other than that, I couldn’t care less. But here we were, going to dinner with the Colts, and I know that my companion has her Super Bowl program she’ll try to have signed, and I’m thinking, “Gee, I don’t have anything to get autographed…unless…” That’s when I decided to try to get my head signed. With a blue Sharpie. Heh heh.

I was specifically hoping to get my head signed by Tony Dungy. After all, we kind of look alike these days. Plus, I have a lot of respect for him. I also wanted photo documentation of the whole head-signing process, so that I could post it here. I think there’s just something about having a big bald chemo head that makes you kind of bold. Or at least it does if you’re me. Besides, I really don’t plan on being bald again, so this is like a once in a lifetime opportunity, right?

Alas, it was not to be. Bill Polian was the only member of the Colts organization at the dinner. And while he was an interesting speaker, he’s not head-signing material. See, I told you I don’t get excited about just any old famous person.

Now, about that picture.
Prior to the dinner, we went to the practice field to watch the team practice. If you live anywhere around here, you know it’s been stank nasty hot lately. Bill Polian commented that the heat index on the field was 116 degrees. As we were sitting there, sweating (it’s amazing how profusely one’s head sweats without hair to soak up the liquid) these guys show up. How their face paint wasn’t melting off, I’ll never know because folks, those suits they’re wearing are made of polar fleece! Crazy! People were taking their picture, and I said, “I’ve got to get my picture taken *with* these guys” because that’s way more fun than just taking a picture *of* them. And there I am. And it’s my favorite bald picture to date. Yea me.

Clear

I keep dreaming about my hair. I’ve had two hair dreams so far, and in both of them I suddenly have a decent amount of hair. Not as much as I used to, but enough that people aren’t calling me “Sir.” In each dream someone I know is commenting on how fast my hair has grown back, and I’m like, “Yeah, I know!” Then I wake up bald, or at least mostly bald. I do have some very fine hair starting to grown in pretty much all over. It’s so fine it really doesn’t even have any color. Hubster likes to refer to it as Chemo Gray. I prefer Chemo Clear. How cutting edge is that? Who else do you know with CLEAR hair? That’s what I thought, no one. That’s how cool I am…always on the forefront of fashion and beauty, but of course you all knew that.

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So how am I feeling this week? Well, not as good as last time, but certainly better than during the AC. Friday I went into town to pick up a few things, and got to my last stop (Walmart) only to leave without buying anything because I was seriously feeling like I was going to throw up. Now, there is a chance that it was the effect of that stupid, overcrowded Super Walmart, and not just me. However, I really didn’t feel like puking at Walmart (because I like to reserve that sort of thing for higher end retail outlets like Nordstrom) so I went home. I told Hubster, “I don’t know what my problem is!” He said, “Gee, maybe it’s chemo?…cancer?” Yeah, yeah yeah, but I’m just SO over this. Sheesh! Like I have time for unproductive trips to Walmart. I think I’ve figured out that it was the pain meds that were making me feel nauseous. So, I’ve stopped taking them during the day. Right now, if Tylenol can’t knock it out, then I’ll just have to deal with it.

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Oh, by the way, remember that dog I was telling you about in the previous entry? It occurred to me that it wasn’t called a Lunger, but a Lurcher. Hey, what can I say? Blame chemo brain. Close enough—they’re practically synonyms anyway. Now all you faithful readers who were wanting your very own hoity english manor mutt won’t have to be embarrassed by using the wrong term when inquiring amongst your english manor friends. Walkies!

Walkies!

Okay, which one of you has been taking Beginning Voodoo Doll Construction at the Y this summer?

Yesterday at chemo I had to get stuck 7 times two accomplish 2 successful sticks. Two for the prerequisite blood sampling and 5 more for the actual chemo drip. Not fun. It’s usually not this much drama, but apparently after so much chemo the old veins just start to revolt.

I had my treatment at the Hematology-Oncology center because Dr Birhiray was on vacation. Hubster and I had been referring to it all week and Death Row because, unlike the Breast Center chemo place, this place has people with all types and stages of cancer. I was by far the youngest patient there. After all my drama, I commented to the gentleman next to me, “I bet this makes you glad you’ve got a port!” He said, in a voice turned raspy from his ongoing radiation, “I was just going to congratulate you on getting through all that!”

The nice thing about Death Row was that since I was the only female there who sat around without a head covering, and I was new there, I got several compliments on my cute, bald head. Hey, I gotta take whatever I can get these days. Yea me.

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Hey kids, want a career that provides more money than you know what to do with and all the vacation time you want? Become an oncologist!

While waiting to see the doctor yesterday—not Dr Birhiray, who was on vacation—Hubster picked up a magazine in the exam room called Country Life. Now, you’re probably thinking it had to be full of old tractors, gardening, beekeeping and the like. (It even had a picture of a scruffy dog on the cover.) I’m sure he was thinking that, too. Nope. The first 108 pages were glossy ads for real estate, specifically manor homes in the UK, Caribbean vacation homes and even private islands. I can’t even tell you how much they listed for as the prices were all in Great British pounds.

And that scruffy dog? Well, that, my friends is a hoity, specially bred mutt known as a Lunger. Doesn’t that sound all British manor quaint? Makes me think of the English lady who used to be on TV training dogs. I can hear her now…”Walkies!” These things are sold for what amounts to several hundred dollars to manor dwellers for their sporting pleasure.

Wow. This is so not my reality, and I daresay most likely not the reality of any of the other patients.

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I’m feeling pretty good today. Always do on Wednesday, thanks to the ‘roids. Rah! I think I’ll go ride the Tour de France!

Thurday & Friday are usually the worst, and by Sunday I’m pretty well good to go. Taxol has been way easier than the AC combo I had before. It could not have been much worse, anyway. I’ve been walking and biking some the last few weeks. I told Hubster that after chemo is over and before my next surgery I want to go do some hiking in Brown County or maybe some canoeing.

And speaking of surgery…
I’m currently waiting to find out if my insurance company will pay for genetic testing to see if I carry either of two breast cancer genes. If you’re a young BC patient, it’s often suspected that you might have come by it genetically. If I carry this gene, not only does it make my chances of recurrence more likely, but it also means I’m at increased risk for ovarian cancer. If it comes back positive, they’ll be recommending I have those removed too.

The other thing is that if I’m positive, Mini Me has a 50% chance of having the gene. So would Garlic & Bagel.

So, all that being said, I ask for your prayers on this one. A) Pray that the insurance company will cover the testing, because folks, it ain’t cheap. B) Pray that it comes back negative, not only for my sake, but for Mini Me’s & my sisters’ as well.