I’d Rather Have a Butterfly Hand Than a Crab Arm

Yesterday I had my check-up with Dr Birhiray.  The worst part of that these days is the blood draw.  Lymph node removal on the mastectomy/reconstruction side dictates that  blood pressure cuffs & needles are forbidden on that side forever.  For-ev-er.  The reason being that any sort of infection in that arm could lead to lymphedema, a condition in which the lymphatic fluid doesn’t drain out of the arm like it should, and causes the arm to swell.  Permanently, in some cases.  This always makes me think of the fiddler crabs we saw a few years ago on Little Tybee Island, and while I thought they were neat, I really don’t have any desire to sport the fiddler crab look.  So, I try to avoid punctures and other arm trauma at the doctor’s office, although I only sometimes successfully manage to avoid such things in the kitchen.  So far so good, though.  No crab arm yet.

 Anywho, the end result is that any time blood needs to be drawn, it has to come out of the right side.  And these days the right side is putting it’s foot down and refusing to give the requisite blood.  You can only poke the same place so many times before it forms a shield of scar tissue not unlike the armor plating on the Batmobile, or at least as tough as that really sorry excuse for Indian flatbread I made the other night.  (No wonder that cookbook was on the clearance rack at Half Price Books.)  Yesterday was the second time in the last three visits that I’ve had to have my blood drawn via the little butterfly needle in the hand that is normally used to administer chemo.  More than once I’ve suggested that they stick my foot.  The foot has nice, plump veins that look up at me and laugh as I’m sitting there for 5 minutes waiting for an adequate amount of blood to be drained from my hand.  But, for whatever reason, they never take me up on that. 

 After my blood was drawn, I could have gone back out to the waiting area like a normal person.  But I like to visit my chemo nurses.  Maybe because we bonded during chemo, or maybe because they always tell me how great I look.  Okay, probably the latter.  So, I went back to the chemo area to say hi to Leslie and Karen, and I told them that I started chemo on May 8th, so it’s been almost exactly 2 years.  As usual, they commented on how much my hair has grown, and then they said, “Come out here and meet some of these ladies.  They’re just getting started, and they’d probably be encouraged to see you.”  As is often the case when I’m visiting back there, I’m like their poster girl for good attitude and good health.

 So, I got to meet some of the ladies on the chemo floor.  Nurse Leslie pointed out to one group of ladies that I’ve “been through everything you guys are going through and look how great she looks.”  I then explained to them that I’d been through chemo, radiation, and 6 surgeries, so indeed, I had done it all within the last couple of years.  They asked me questions like “Did your hair come back the same color?” and “How soon did you hair start growing again?”  Hair, as you can see, is a hot topic with chemo girls. 

 Soon, though, another nurse came and fetched me.  For once, Dr Birhiray was only half an hour behind, and my exam room was waiting for me.  But, I’m so glad I got to spend some time talking to those ladies—even if Hubster did wonder what had happened to me.  I am so blessed to have the opportunity to encourage folks by sharing my experiences.  I enjoy doing that in person, as well as here on the blog, so please don’t ever hesitate to ask questions.

 While I was there, I showed Dr B his fan club page on Facebook.  Not being on Facebook himself, at first he was a little confused—he thought I’d moved my blog or something.  But I soon had him straightened out, and he read the messages and got a big kick out of the whole thing.  So thanks to those of you who joined the club and left him a little note.

Chin City


That’s not really the greatest picture of me. It doesn’t really look like me. But, I posted it because after about 562 attempts, I finally managed to get one with only one chin. Even so, as you can see, it involved the use of a cowl neck sweater, a strange camera angle, a come hither look, and some flab rolled up and held in place with hair clips.

They say it takes more muscles to frown than to smile (Now you know why I smile a lot—I’m not happy, just slothful.) but I think the real question needs to be how many chins does it take to smile, because whenever I snap a smiley photo these days, there are at least three. And if I try my old standby trick of sticking out my chin in order to make my face look thinner, I only succeed in looking downright maniacal.

I didn’t think there could possibly be any worse pictures than the ones I’ve taken myself, until I saw a picture G’s mom took of me at the hospital when Macgyver was born. People, I have JOWLS! Jowls, I tell you! I look like Alfred Hitchcock, for crying out loud! And while I have always enjoyed Hitchcock’s work, I don’t want to look like him.

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Somewhere I have an itch I need to scratch. It feels like an area in the radiated part of my chest needs a good scratching. The only problem is that I don’t have any feeling where I feel like I need to scratch. So, when I do scratch where I think my itch is residing, it just keeps on itching. Hubster’s theory is that my nerves are all jacked up from the surgery, and so my brain is getting signals telling me I itch in the wrong place. If that’s the case, I guess whenever I feel an itch I need to scratch everywhere else until I hit the right spot.

Maybe I should try scratching under my chins.

Fork Tender

Tomorrow is my last day of radiation—yeeeeee haaaww! So long, dark and couchy waiting room! Good riddance, jigsaw puzzles! Buh-bye Guiding Light! No longer shall you oppress my weary soul. After tomorrow, I’m outta here, never to return. At least, if I’m lucky, the cancer center will have moved into its new building before my follow-up appointment. Ah, the new building…towering in all its modern glass and brick beauty, only a half block from the current cave of a facility. Oh new bright and beautiful building, how I have longed to take my treatments within your gleaming glass walls! How I have yearned to slip the surly bonds of 1994 décor and touch the face of 2008!

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Back to being burnt…the pit healed up just dandy, only to be followed by a big nasty burnt area on my chest. This was quite painful, and as a result, I ditched the bra, which means I ditched the Foob. At Christmas. And there he was, all dressed up like Santa, too. Boy, was he ever mad at me! He’s still not speaking to me, which is just as well, because that phony French accent was really starting to get on my nerves.
And I was in pretty good shape up to about treatment #24, too. It’s really kind of bizarre how fast my skin went from being a little red, but not in bad shape to “Oops, I didn’t make it to the fallout shelter in time.” Dr Haerr said that’s how they used to determine that a person had gotten enough radiation. Apparently you were done when you looked done, or were fork tender. Lucky me! Nowdays, they have a set course of treatment, and I got to keep going even though I definitely look and feel done.

Foobitude

It began after my last post. First, it was just a whisper on the crisp, December air. “What’s that sound?” I wondered aloud. Slowly, the sound began to grow until there was no mistaking its message: “WE WANT THE FOOB! WE WANT THE FOOB!” Of course The Foob, who had been highly perturbed that I didn’t write about him in the last entry, was feeling mighty full of himself. In his snotty French accent (the one he’s recently adopted that sounds suspiciously like the French peas in Veggie Tales) he said, “Zee! I told you zay do not care about your zilly radiazohn or zee zilly roller zkates. Zay want Zee Foob! Now, go make me a zinnamon latte.”

You’ve created a monster. I hope you’re all happy.

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Provided that the ol’ pit heals up, I’ll be finishing my radiation next week. Woo hoo! Right now I’m doing what they call a boost. This targets the scar line, giving the armpit a break and a chance to grow some new skin. After this week, I’ll have 3 more treatments. I’m so ready to not have to drive into town every day.

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Lately, it seems the question everyone asks me is, “Did they get it all?” They are, of course, referring to the cancer. I guess everybody wants a happy ending. Either that or they’re getting tired of this whole thing. “Dang! I wish she’d hurry up and get cured already! Sheesh! This is taking for-ev-er!” Trust me, nobody would rather have this all be ancient history than I would. The problem is that there are no guarantees. You can’t mess around with this stuff, so we always assume that they did not get all of it. Otherwise, why would I be doing radiation? For the tan?

So, the answer to the question is “We hope so, but probably not.” Even if I get the all clear in the next few months, I will still have to be tested regularly for any signs of cancer. The possibility of recurrence will always haunt me. There’s no ending, happy or otherwise, in sight right now.

But don’t let that bum you out. Life is not on hold because of a little cancer. Good grief, how far behind would I be by now if that were the case? Besides, that would be SO boring. Imagine if I turned down every non-cancer related opportunity. “Sorry, we won’t be able to go skating. I’ve got the cancer, you know. And I’d love to shop for an Angel Tree child, but I can’t because I’m just totally wrapped up in thinking about my cancer this year.” Or if every conversation revolved around me and my cancer, how obnoxious would that be? “Hey, Susie, what’s going on? I just thought I’d call and tell you about my cancer—again. It is all about me, you know. By the way, do you know anyone else with cancer? I just love cancer stories, especially the ones where people end up dying. I feel so refreshed in my cancer-ness every time I get to really focus on cancer…”

Mobile Blogging, and One of my Favorite Things

Wow! It’s been a long time, huh? It’s December, and life is crazy…what can I say? This year has been particularly insane due to Hubster’s work schedule and my radiation schedule. Add that to the usual stuff, and you’ve got one heap of busy. Last Friday, for example, I had radiation at 10 AM, then the monthly homeschool skating day from 1-3 PM, then ringing the bell for the Salvation Army from 4-6 PM, then an open house in the evening. Interspersed throughout was shopping for our Angel Tree kid, lunch and a whole lot of driving.

One of these days maybe I’ll learn to multitask well enough to post blog entries while I’m behind the wheel. You know, maybe I could just have some sort of high tech setup where I speak my blog entries and they’re posted here in real time….”I’ve just arrived at radiation where I’m sure that Kelly has changed the channel over to the Food Network…ARRRRGGGHHH! Oh my word, it’s on channel 10 AGAIN! Stupid Family Feud!” (Later that day…) “We’re on our way to the skating rink. This is the first time I’ve been able to use the skates Hubster got me on Ebay because…DRIVE MUCH, LADY?! Sheesh! HEY BUDDY—EVER CONSIDERED DRIVING IN YOUR OWN LANE?!” Okay, maybe that real time mobile blogging thing isn’t such a good idea.

As a side note, I just read the above paragraph to Mini Me, complete with Sam Kinnison-esque screaming. Upon completion, all she had to say was, “There’s something wrong with you.” What would I do without such affirmation? She’s the wind beneath my wings, I tell ya.

So on Friday, I went to radiation and informed them that the skin was peeling in the armpit. (And, FYI, I have NOT been wearing deodorant lately) I had discovered this the night before when applying cream to the area felt like I was sawing on my pit with a steak knife. They tell you (you know, that omniscient and mysterious “they”) that radiation may cause a sunburn sort of thing. One of my books actually says, “You’ll probably have a mild sunburn effect.” Let me just say that this doesn’t look like any sunburn I’ve ever had…but perhaps they mean the type some would normally get from direct physical contact with a flaming orb. At the very least, it looks like I spent a good 30 minutes pouring boiling water onto my pit. The rest of the treated area looks a little red, but doesn’t feel bad at all.

Am I the only cancer girl out there who has had it up to her flaming armpits with people not telling the truth about this stuff? When THEY tell me that I might peel like I’ve had a bad sunburn, that brings to mind a painless, dry peeling, not the nasty, painful, serious skin loss I’ve got going on. This isn’t the first time I’ve had people not quite tell me the whole truth about side effects. What’s up with that? I can handle just about anything, but it’s helpful to me if I can have some idea of what I’ve got to deal with instead of some sugar-coated bull!  

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As I mentioned before, one of the places we went on Friday was the skating rink. Joy! I LOVE to roller skate, but even though I’d recently gotten a pair of skates, I wasn’t yet allowed to use them per Dr Schmidt’s orders. (He never lets me have any fun.) While some people may consider Disneyland to be the happiest place on earth, for me, the happiest place is the skating rink. There, I get to enjoy two of my absolute favorite things: roller skating and watching people fall. Yeah, that’s right, watching people fall. Flame me if you want to—I don’t care. Physical comedy just slays me. And no, I don’t wait to laugh until after I ask, “Are you okay?” Now, if somebody fell into, let’s say a big hot dog factory meat grinder, I might not think that was funny. But just a run of the mill, arms flailing in a desperate attempt to steady oneself by grasping madly at thin air, good old fashioned fall on the butt is my kind of humor. Consequently, being at the skating rink full of kids is a little slice of sparkling disco ball heaven. Friday was a good day.

You Wouldn’t Like Me When I’m Angry

The last few days, the folks at the Radiation Shack have been running behind . The extended time in the waiting room has been sapping my will to live. If gnawing my arm off would’ve gotten me away from the blaring soap operas, I’d have done it. In fact, I was half-tempted to start gnawing just to take my mind off of the assault on my senses. One day I was there 1-1/2 hours…only about 20 minutes of which did I get to spend in the sanctuary of the treatment area. Yesterday, I was lamenting all of this to Kelly, one of the therapists. She commented that the TV has been on the same channel ever since she’s been there. People, she’s been there for 5 years! I’m thinkin’ “Good grief! Even back in the day when we had to use carefully sculpted aluminum foil on the rabbit ears, we still managed to get at LEAST two channels!”

Why in the world would that TV have been on the same channel for five years straight? Well, I have a theory. The TV has a sign taped to the front, over the control buttons that says, “If you want the channel changed, ask the receptionist.” My theory is that this is because about 5 years and 1 day ago…the day before Kelly started working there…there was a big throw down in the waiting room over the channel selection. Coincidentally, the normally mild-mannered Dr Haerr had just completed an experiment gone awry, in which he’d caused himself to turn green, become muscle-bound, and bust out of his clothes whenever he became angry. When Dr Haerr saw Mildred and Ruby beatin’ the tar out of each other, and tearing up the joint in the process, he lost his cool. Needless to say, this made a lasting impression on everyone involved. Everyone, that is, except Dr Haerr, who curiously has no memory of it.

In the interest of harmony, the receptionist decided to switch the TV to Channel 10—which neither Ruby, nor Mildred wanted—and put up the aforementioned sign. Other folks could request that the channel be changed, but everyone was so freaked out by the whole episode, that no one ever has.

Fast forward to yesterday…I’m crying to Kelly about being oppressed by the soap operas. She comments that she just might have an idea of what to do about that. As I’m leaving, I give her a card with my blog info on it. Today I come in, and lo’ and behold—it’s the Food Network! Woo hoo! Somehow, the room seems lighter, happier. Somehow, I don’t mind the time I have to wait. When they call my name I’m like, “Already? Dang it! Emeril’s right in the middle of Chicken Spinach Lasagna.”

I’m pretty sure that I wasn’t the only one who appreciated the change, either. Even the woman that Mini Me and I have nicknamed The Crabby Lady for her constant negative commentary was happier, in her own crabby way, and said, “I hate this place! At least they don’t have those stupid soap operas on today—I hate soap operas…”

Thanks Kelly—you rock!

We can only hope Dr Haerr prefers the Food Network, too.

A Gift for Us All

This blog entry is brought to you by Radioactive…the new fragrance by Juicy Faux-ture featuring the alluring scent of BO and Band-Aids, accompanied by a hint of Sharpie. Be unique, be pungent, be Radioactive!

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I got the best birthday present EVER on Monday when Dr Haerr told me that I can indeed wear deodorant. Woo hoo! Now you’re probably wondering why the rules changed all of a sudden. Well, it’s like this: I was funky, so when I saw Dr H on Monday I said, “We need to talk about this no deodorant thing—not only for my sake, but also for the sake of my friends and family.” After examining my skin he said, “You can wear deodorant for now. But when you get further along, and your skin gets irritated, you won’t want to wear it.” I said, “So, it doesn’t have any effect on the actual radiation process?” (I’ve read all manner of things—mostly online, of course—talking about the aluminum in deodorant messing up the radiation.) To which he replied, “No, not at all.”

Well, I’ll be! That was WAY easier than I thought it would be. I was still doing the happy dance when I went to radiation on Tuesday, and I triumphantly announced to the radiation therapists, “Dr Haerr said I can wear deodorant!” They were surprised. “He told you could wear deodorant?” they asked. Apparently, no one ever goes back and asks after the fact. They just trudge along the radiation pathway, their own putrid stench strapped to them like an inescapable BO-steeped backpack. Not me, Buddy! I always try to get special treatment. Sometimes it even works for me. (Now if I could just get rid of this Band-Aid scented cream that I’m required to apply several times daily.)

How sad is it that the best birthday present is permission to wear deodorant? It only serves to illustrate once again how bizarre my life has become over the past 10 months. This time last year, if the Hubster had told me, “Instead of going out to dinner, I thought I’d let you wear deodorant for your birthday. What do you think?” I’m pretty sure I would not have considered that to be such a wonderful gift. In fact, I think I might have had to go all ninja on him. Fast forward to now, when not only am I excited about my sweet smelling pits, but also thrilled beyond measure to have over an inch of hair (on my head—not the pits), and euphoric over my ability to taste. Even though this normal isn’t really my old normal, I’ve come to the conclusion that it is, nonetheless, very good. Or at least I appreciate it more.

We Are the World

Today was my first radiation appointment. It was really a non-event. The worst part is having my arm fall asleep because of the way it has to be held up over my head. The folks there are very nice, but it was cracking me up how they were telling me what a good job I was doing. I was laying still. That was my job: Lay still…on my back…for about 5 minutes. It made me wonder what kind of ADHD patients they normally have. After all, most of the people I’ve seen there are at least 80 and on oxygen. How fidgety can they possibly be?

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Okay, is there anyone besides my 10-year old daughter who thinks the foob is creepy? Here I thought it was kind of cute in its Cabbage Patchness, and yet today my lovely, encouraging child announces that it’s creepy in that picture. How creepy? Well, her exact words were, “Mom, your foob is creepy…it reminds me of Michael Jackson.”

“What? It does NOT look like Michael Jackson! Back off my foob already!” says an indignant I. “Yes it does,” the impertinent little twerp replied….”Look, Mom, Michael Jackson shaved his head for you!” Okay, I’ll admit that the fact that it’s whiter than me, and has no nose to speak of, does lend it a certain Cabbage Patch: Neverland Ranch Edition quality. Still, I think that’s going a little far—the foob can’t even sing, for crying out loud, let alone moonwalk.

The Foob is quite a celebrity these days, though. Seems no matter where I go people want to talk to me about the foob. “Does the foob always have its face on?” they ask at the baby shower. “I thought the foob was hilarious in your blog,” they say at church. “How does the foob feel about the plight of breast prostheses in northern Greenland?” they inquire at the Homeschool History Fair. The foob has become quite popular and I think it’s starting to go to his head. (Which is the only place it can go, since he has no body.) Just yesterday he informed me that his bra must be warmed to exactly 82-1/2 degrees—no more, no less—before he is placed inside, or he simply cannot function. Today he announced that he’s collaborating with Bob Geldof on a charity CD called We are the World…hey, wait a minute…

Culture Shock

As you know, I’ve had all of my treatments and surgeries in Indy up until now. Further, I’ve primarily been cared for in places that cater to breast cancer patients. The offices are decorated in soothing, tasteful colors and usually have a lot of windows to let in plenty of cheerful sunshine. If there’s a TV it’s tuned in to the Food Network or Martha Stewart. The clientele, while mostly older than me, are usually still in pretty good shape.

Contrast this to the small local cancer center where on Tuesday I had my first appointment with Dr Haerr. The waiting area is a big, dimly lit room, decorated in burgundy, hunter green and navy. We’d been there about 2 minutes when Hubster’s cell phone rang—it was 1994 wanting its color scheme back. The perimeter of the room was flanked with sofas, on which those of us not in wheel chairs sat. A TV blared soap operas, and there was a table with a jigsaw puzzle in process on it. The whole place just screamed to me, “You young whippersnappers with your fancy leopard print mastectomy bras think you’re special because you can breathe without an oxygen tank, do ya? There’ll be no daylight shining into this place, Missy! Now sit down and wait for death like the rest of us.” I said to Hubster, “This place reminds me of a funeral home.” He agreed and described it later as “all dark and couchy.”

The people that work there were all very nice. It was amusing to me that they felt the need to assure me that my treatments wouldn’t make me radioactive. Do people really worry about that? I was disappointed to find out that radiation will not give me the super powers I’d hoped to gain, however. The high price of gas was making super hero style flight look really good. I did learn a couple of things, though. First, I am not allowed to wear deodorant on that side for the entire 6 weeks of treatment. The nurse said that the sweat glands won’t be working anyway—and y’all had better hope she’s right. If that weren’t gross enough, she also said I can’t shave on that side. It’s like the Pit Hog came out and saw his shadow, so there will be six weeks of funky, hairiness. Ick. The nurse claims that the hair will cease to grow as a result of the radiation. I really hope so, or I may have to adopt a French accent and pretend I’m an exchange student.

I go back on Thursday and Friday to do my simulation. That’s where they figure out exactly where they are zapping you, and mark your body accordingly. I’ll be starting actual treatments on Monday. Dr Haerr—who I like a lot, by the way—said we can probably cram all my treatments in before Christmas, since that was my goal. Woo hoo!

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foob

My prosthesis has a name. I call it my Foob. Short for Fake Boob. As you can see from the picture, it bears a striking resemblance to its Cabbage Patch cousins. The Foob is not silicone—I haven’t graduated to that yet—it’s more like a dense pillow with a bean bag or something in the very middle to give it some weight. It does a good job of filling out my clothes, but I’ll be glad to have reconstruction so that I have something up there that’s actually attached to me instead of riding around in its own little side car.