Redefining Myself

The world-renowned breast cancer specialist Dr. Susan Love (as far as I can tell that's a real name, how sweet is that?) says that it is almost impossible to go through cancer treatment without becoming somewhat of a new person. And that it's typical to get to a point that you begin to wonder who you have become.

I remember similar feelings after my open-heart surgery. Except that time I had a house full of babies, and the only thing I really could do was get back into the thick of being Mommy. Plus, there was no sense of being part of something bigger than myself. Apparently heart disease is a big problem for women, but I literally knew of no other young mothers whose hearts had failed due to a birth defect. While I certainly had a new appreciation for life, I was an army of one. There was no one to rescue, no new generation that needed saving.

And while I have no delusions of changing the world, I do feel enlisted - into what I'm not sure. I just know I have a sense that I need to do something worthwhile with this experience--something that will have made it worthwhile. At times I feel like the old me is emerging - but then I notice the hair in wrong places, the odd bumps and lumps, the aches, and worries about those aches, and realize that the old me is gone for good.

I've done little things like change my car. The new hairdo is a given. But the biggest changes are yet to come - like the question of where we'll choose to live out the rest of our days. And what I'll finally decide to be when I grow up. It's a big question and I don't have an answer yet.

But there's another question that maybe you all can help me with: what do I call myself? My blog has me listed as a "cancer warrior". That felt right at the time I wrote it. But every soldier reaches a point when the heavy fighting is over, and they have to retreat and lick their wounds. That's me now. Still a fighter, but no longer a warrior.

The accepted term these days is 'survivor'. And maybe that's what I'll use. But it brings to mind a half-starved person strewn on a desert island. I heard of one lady who calls herself a 'thriver'. I liked that, and maybe I'll use it. But Rob gave me a thumbs down. There's always 'victim'. Ha. As if. Maybe 'Cancer Conquerer'? I've always liked 'Conquistador'. That was the mascot of the high school I was supposed to attend in California--before my parents stole my whiny teenage self to Utah. (For those of you who have read Where Hearts Prosper, that happened to be the mascot of Paige's high school as well.) Anyway, back to my dilemma, 'conquistador is a bit of a mouthful, and little pompous. I've thought of 'Cancer Advocate', but pretty much anybody could call themselves one of those.

So there you have it - I started to set up a poll, but that got way too technical. So if you'll just go to comments and tell me your favorite for my new title? Or give me a new idea?

Here are the choices: survivor, thriver, conquerer, conquistador, advocate.

And maybe after I get that figured out I can start working on that big question of what I want to be when I grow up.

UPDATE: Since comments don't always make it through (I had to tighten things up to stop the flow of junk comments) I wanted to add that there have been to votes for the new suggestion of 'cancer champion', in addition to the to votes for warrior and one very persuasive vote for conquistador. Keep 'em coming! =)

Snowy Tulips

My Momma called last night and told me that when she checks my blog and it hasn't been updated, she assumes I must be too tired to do much of anything. So I guess for Momma's sake I'd better post something. (The woman is pushing on 90 and doesn't need any more stress than she currently has) The truth is I'm beginning to feel like some kind of normal--not a true everything-is-like-it-was normal. But a new kind, one I suppose I can live with.

Sometimes I feel like the tulips and glads in my garden. At times they're standing up tall, facing the sun, looking new and fresh and like they totally belong here. Then suddenly a storm will come in and dump snow on them, and they look rather confused and and pitiful and out of place.

I'm getting my energy back, able to exercise for real and not just with the slowest pace on the treadmill. I've gotten Brandon back into his music, though it's still just hit and miss. In the last week I actually (drum roll please) interviewed for a job. It's part-time editing work and from my home. Don't know if I'll get it, but just the fact that I feel like I can do it is wonderful. AND (longer drum roll) I bought a new-for-me car! It's got a few miles on it, but it is beautiful (at least in the pictures). Bright red and sporty. Rob asked me if I was going through a mid-life crisis, and I told him it's more like a post-cancer celebration. It's on its way from Texas as we speak, and I am sooo excited. Oh, and it's a manual transmission. And I kind of don't know how to drive those. But I figured it's time I learn. (I'm sure there will be more on that to come.)

So you see - I'm back in the world of the living, doing normal (well, normal for me) living things. Of course I also have three scans in the next two weeks. They're not looking for cancer, as some have assumed, but watching for problems that my meds could cause - my bones, my heart, and my blood vessels.

The changes they're making to my hormones cause some wild and wacky things to happen from time-to-time (like snow in May) but nothing I can't live with. I keep getting reverse hot-flashes (as I call them) which are just deep internal chills. (Weird I know, especially in the summer, but I'll take them over hot-flashes). And I grew a beard then broke out in a rash when I tried to get rid of it. (I warned you it was weird stuff). My bones scream at me when I stand up, like I'm even older than my mom and have no right to be forcing them to move. But it only lasts half-a-second and then I feel fine.

So there you go. I guess you could say that I'm not quite out of the pool, but swimming much closer to the surface than I was before.

It's Finally...HAIR!!!

After long last and lots of obsession, I finally have what my Nat calls "a full head of hair." Brandon isn't so sure. He was a little uncomfortable when he learned that I didn't bring a hat for our shopping trip yesterday. But after a few minutes in the store he informed me that no one had stared yet. I told him it was okay if people stared, it just meant they were trying to figure out if I'd been sick or if I just liked really short hair. He shrugged and mumbled that it's still best if they don't stare at all.

I actually did get a few stares from some tiny kids, but they smiled back when I smiled at them, so I don't think they were traumatized. Just confused.

For any of you sick-os who are just dying to know the details (sorry to call you sick-os, know that I dearly love anyone who cares enough about me to want to know the details, I just feel kind of silly giving them, but since I keep getting asked...) In the last couple of weeks I've had to dig up tweezers for my eyebrows...shave my legs more times than I can count (those leg hairs are in some serious quest to make up for lost time)...the eyelashes are nice and short but I can find the little stubs with mascara...and anything I haven't mentioned is doing nicely too.

This was me watching my boo-ti-ful grandson on Monday, May 6, my last day of radiation, with my ouchy burns still fresh and raw:





And this is the two of us baldies today (two weeks later) with the wounds all healed up. He's a little too mesmerized by my web cam to smile, but I promise we were having fun. Can you just STAND all that hair? I even put gel in it today (as if you couldn't tell.) ;)






Woot! Woot!

He Ain't Heavy...

Sunday night dinner with the whole fam, and someone mentioned the word the heavy, which prompted my husband to say, "He ain't heavy, he's my brother." That's just what he does - names songs or movie lines or whatever that fit the conversation. All six of the young folk at the table gave him a blank stare. "What are you talking about?" one of them asked.

He repeated the phrase, waiting for some recognition from this group -- who are typically on top of the music scene -- but none came. "Oh you know the song," he said. And of course I started singing it, cause that's what I do --- sing pretty much any song I'm reminded of.

But they were still blank. And I was shocked. I thought the song was as much an american icon as Yankee Doodle. Rob found a computer, did a search on Youtube, and played it for them. They all agreed it was a beautiful song, but it still didn't ring a bell with any of them. Huh.

The song has stayed in my head since then, and taken on all kinds of significance - like reminding me of all the people who have supported me through this road I'm on. And the little boy who was recently discarded by the very people who should have been guiding him on his journey. And most notably my brave nephew who just left this weekend to serve our country by rappelling out of helicopters to rescue injured soldiers.

After a little research I learned that while the Hollies did the original version way back in the 60's, it has since been remade by Neil Diamond and the Osmonds. And while they're all great musicians, I guess they're not really top of charts with the younger crowd. So I can hope Glee or American Idol or maybe even House picks it up and makes it new again. But in the meantime, I thought I'd post this nice version of it here.

UPDATE: This is what my sister said about her boy after she saw this, "Early into the pre-deployment in Texas, Tom told me how much he was working out and building muscle. I asked why... "I want to be able to pick up any wounded soldier, throw him over my back and get him out of danger." War is Hell - but they're there with their brothers."

Nobody plans for this...

NO ONE looks forward to the day they get to join the ladies in pink. We're a reluctant group, if ever there was one. But here we are. The women who are being celebrated at the Susan B. Komen Race for a Cure. Alive, and happy for it.

I have to say it was...what? Awe-inspiring? Amazing? Heart-breaking? A combination of many emotions I guess, to stand amidst this many women knowing that at some point in their lives they've all had the same kind of cruddy year I've had. They're all intimately familiar with terms like Diep-flaps, node counts, aromatase inihibitors, and tamoxifen.

Some had hair dos or shiny scalps to prove they were still in the midst of it (like me), though most sported sassy short styles of varying lengths. One women was clearly embarrassed by her beautiful locks that went to her waist. She had a unique type of chemo that doesn't cause hair to fall out. I'm thinking I better find out that particular treatment wouldn't have worked on me, or my doc is gonna be hearing about it. But she said NOT losing her hair was the hardest part for her. It made her feel like she wasn't legit or something. I guess I get that, and I certainly don't want to discount anyone's feelings, but I think I could live with it.

Then there were the women with tiny kids. Those made me cry. And also the ones in white shirts with papers on their backs listing aunts and sisters and mothers who had been victims. I couldn't help but cry for those girls who live waiting for the time bomb in their own chests to go off.

And that, I guess, is why we race.

This is the actual race, with me and my girls. Jen (right) actually ran the whole 5K. Woo-hoo you buff thing! (Little Ethan watched with his dad). Whit (bottom right, in the middle) was game for the run, but we couldn't find Jen in the crowds, so she walked the sissy version with me and Nat. And that top left is...yes...me running. Well, okay, sort of running. And, yes, it was a re-enactment. But only cause my awesome and supportive son-in-law didn't have the camera ready the first time. Of course even if he had, he wouldn't have expected to see us running (which we did for TWO WHOLE BLOCKS. If you ask Whit is was like two seconds. But what evs...I was sweating.)


Here we have the Pink Parade. After the run they sent us to the "pink cafe" to find our group of survivors (1 to 5 years, 6 to 10, etc.) We chatted tentatively as we waited at the end of the line - us newbies - finding out all our differences and similarities in this game we've been thrown into. And then they marched us past our families--all the beautiful people who don't want to be playing the game any more than we do...whose lives have been put into turmoil just as much as ours, but who have much less control. All they can do is cheer from the sidelines and pray. Not just on this day but every day. And mine do a great job of it.

And finally, all the Pink Faces. They played music that made us cry. Sent up a flock of doves that made us ooh and awe (yeah, I know, white homing pigeons, but it was way cool). And then called us all kinds of nice things that made us cry some more. We're a beautiful group, aren't we?

Somebody Help Her!

You know how it is when you try to do too many things in too little time and you suddenly turn into a klutz? If you don't, bully for you. If you do, imagine adding a therapeutic glove to your right hand and instructions not to lift anything over a few pounds with it and you have the recipe for true klutz-dom, which is becoming an all-too familiar scenario for me.

Today I went to Costco after my lymph appointment, then had to pick up Brandon at his school at 4:15, get home and unload the car and then drive to 7-11 to meet a photographer with Natalie at 4:30 for her senior photo session. I called ahead and asked the kids at home to be ready to help. I didn't arrive until 4:25, but Dan and Nat came rushing out, as instructed. We made a great team, until the last load, which included a giant bottle of orange sauce, which I dropped onto the floor instead of the counter. It was not a shatter-proof bottle. It was 4:30.

I snatched up the bottle and got it into the sink, about half full. Then I decided to do the same thing with the kitchen rug, since it contained about half the orange goo. But in the process, I sent a huge streak of the goo up the cabinets and across the counter. It was 4:32.

At this point I'm just trying not to swear. Orange goo is everywhere, (did I mention that I spent the entire morning cleaning just yesterday?), I'm supposed to be gone, I haven't even had a chance to go to the bathroom, and I'm wearing a blasted glove that doesn't allow me to just grab a rag and clean up the blasted mess.

The three kids are all frozen, waiting for me to explode I think. Nat, of course, doesn't want to come anywhere near my mess, since she's just dolled herself up and is supposed to meet with the photographer ten minutes ago. So she calls out, "Somebody help her!"

Then my little, loveable Brandon steps over the mess, his arms outstretched, and gives me a hug.

And who could ask for more help than that?

Rad Grad

Today was my last day of radiation. I got a diploma and everything. The staff members, who have been my friends and confidants over the last five weeks, all asked me what I was doing to celebrate. But I didn't have an answer, since I haven't really planned anything. I said lame things like the hubby will take me out to lunch, and I'm watching the grandbaby, and my daughter is being honored by the principal tonight (way to go Nat!) so we're doing that instead. But I think the reason I haven't made real plans is that I'm feeling strangely ambivalent about the whole thing.

Don't get me wrong, I'm more than happy to stop going to the hospital everyday to get baked. (Which has kept me so busy I haven't had the time and/or focus to write about it. More on that later, I hope.)

It's just that I'm not really feeling like this is the end of anything.

For one thing, I've been told that the burn I'm feeling right now is from treatments of a couple weeks ago, so I'll continue to fry from within for a couple more weeks. And the fatigue will increase for a month or so while my body tries to recuperate. 'The End' was a lot more exciting before they told me that.

Then there's the lymphedema. I'll get back into weekly treatments for that this week. And in three weeks I get to be put back into menopause with the first of monthly (or so) injections. I'll also have another of my regular heart exams which requires an injection of radioactive material ("don't worry, it's perfectly safe"). Plus there's the chemo drug Herceptin that I'll be getting every three weeks through November. And in four weeks I'll start heart tests and blood work for my reconstructive surgery, which, if all goes well, will happen in six weeks.

So you see why I'm not feeling exactly...done. More like Mark my tech called me when I finished the treatment today: "Medium rare." Ding.

Racing for the Cure

So I've decided to Race for the Cure this Saturday at the Gateway, despite the whole Colonel Blunder. My girls wanted to form our own team, so we're (appropriately) called 'Just Keep Swimming'. I was asked to ask ten friends to donate ten bucks to the cause. If there's one skill I totally don't have it's raising money (just ask my hubby). So I'm counting this as asking ten friends, since I know a whole bunch more of you than that will be reading this. If you feel so inclined to help the cause, you can find our team website at: http://www.komenslc.org/index.cfm?fuseaction=donorDrive.team&eventID=501&teamID=5812.

And if you happen to be at the Gateway this Saturday, please look for me. I can use a hug or two. I'll be the one in pink. And if you need another clue, I'll also be the one with about 1/4" of black stubble all over her head! =)