I had an appointment to see the wound/ostomy care nurse today. My ostomy looks good, my ass wound looks good. It's all good.

We talked a little bit about the flap rotation surgery. I have to confess, I'm not wild about having another surgery. I don't know. I feel so good now and I'm exercising regularly (and even running!!! crazy!!). How much is another surgery going to set me back? I don't want to deal with healing AGAIN. It sucked so bad the last time. The nurse pointed out that there's nothing wrong with continuing the way I'm going, packing the wound. At this point, largely due to the iodoform gauze, poor Eric only has to pack my ass once a day. It's not interfering with my daily life at ALL.

I don't know. I'm thinking about waiting to meet with a surgeon until after my CT scan in January. So maybe in February? Maybe we'll know more about what's up in my lungs.

The nurse also asked if I wanted to think about an antidepressant because of course, I was crying in her office. I declined. I don't feel the same as I did when I decided to go the Prozac route in the past. If I talk about stupid cancer stuff I'll totally cry, but who the hell wouldn't? The past year or so has been traumatic. I still worry about things. Most of the time though, I feel really good. There are definitely negatives to my friend Prozac.

I think I'd like to get off this roller coaster, please.

Oh hey, I lost two pounds. That's good and awesome.

Continued positive thoughts are appreciated. And I'll try my hardest to think positively as well. Because I have a lot to be very glad about.

One of the things I've been thinking about and struggling with lately has been getting back to myself. Cancer not only takes over your body, it takes over your life. For many months it was cancer, cancer, treatment, cancer, surgery, cancer, scans. In some ways, it never goes away, at least it hasn't for me. Now that treatment is done, I'm living scan to scan. It was like some crazy full time job with double overtime that I wasn't allowed to quit.

And then I got fired.

So now what?

That's what I'm trying to figure out. It's as if I have to build myself back up after being torn down. And it kind of sucks in some ways. This body is different for one thing. No menstral cycle, hot flashes, a lingering spaciness (which I really REALLY don't like), not to mention the physical issues of my guts being different and getting used to an ostomy, sexual issues, tightness in my hips that I can't seem to get stretched out. I've gone through changes in a matter of months that most people get to ease into over a period of years. It's hard.

I'm trying to go with the flow. I'm trying to be gentle with myself. I'm doing what I can to not stress. I'm working on getting healthy, exercise, yoga, eating decently healthfully, taking vitamins, boosting my immune system.

But sometimes I get a little frustrated. Okay, a LOT frustrated. And angry. What the hell kind of karma is this? What am I supposed to be learning? Why did the lesson have to be so so harsh? I'm not really looking for answers to these questions. I think that sometimes people just have bad luck. Maybe it's supposed to make you stronger, maybe it's supposed to help you appreciate what you do have, maybe it's supposed to lead you to doing something greater. I don't know. I think sometimes you don't get to have all the answers. And I don't know that the answers come from people. I think they come from inside, from learning and growing.

Anyway, it's a journey, right? I'm doing the best I can with the knowledge and ability I have. It isn't always easy. In the now, I'll keep working on myself.

My Thankful Post and a little Go Me!

First, the Go Me!

I was out walking/jogging today, and the Black Eyed Peas "Boom Boom Pow" came on Pandora. What a throw back. About a year ago at this time, I was finishing radiation and today, the day before Thanksgiving, I was done with the chemo pump. I can't believe where I've been and how far I've come in a year. If you had asked me two years ago if I thought I could do radiation and chemo, have a major surgry, deal with an ostomy, do more radiation...I would have said, "No way." But I did it. You don't know how strong you are until being strong is the only choice you have. So go me!!!!

Now, my thankful list. It's not all encompassing. I think that would be impossible, and besides, I need to start dinner in about fifteen minutes. So here's 15 minutes worth of thankfulness.

My friends and family, obviously. There's no way I could have done the last year without them.
My husband.
My children.
It may sound weird, but my health. Although I don't know what will happen in the future, right now I feel pretty good.
The weather in GA. I love it!
My new friends, who make living here so awesome.
Our home.
My stocked pantry
The Internets (and all the friends who come with it, especially my Mixed Drinks ladies)
the beach
COFFEE
and soy creamer
Perspective
Music, especially all the songs that speak to me
my recliner, despite being leather, has brought me through nursing two babies and a bunch of cancer treatment
my sewing machine and my serger
fabric
The ability to write as a way to share
Drinking Ice water (those who have done Folfox know what I'm talkin' about)
tempeh
vegetables
farmer's markets
snorkeling
the camera, for capturing both good and not so good moments over the past year
La Leche League, where I've found knowledge and friends
humor
my bed
laughter
my blue Vue
patience
love
Survior
vegan recipes and cookbooks
imagination
my doctors
wound care nurses who have a sense of humor
my man sandels
maternity pants that hide ostomies
time

I could go on, and on, and on. I have a lot to be thankful for.

So now you go. What are you thankful for? Feel free to put your list in my comments, link me to your blog, or just keep your list to yourself. Even if you don't feel like sharing, MAKE A LIST. It will feel good, honest.

Happy Thanksgiving, friends and family!!!

Raise Your Glass

Right right, turn off the lights,
We're gonna lost our minds tonight,
What's the deal, yo?

I love when it's all too much,
5am turn the radio up
Where's the rock and roll?

Party Crasher,
Penny Snatcher,
Call me up if you want gangsta
Don't be fancy, just get dancey
Why so serious?

So raise your glass if you are wrong,
In all the right ways,
All my underdogs,
We will never be never be anything but loud
and nitty gritty dirty little freaks
Won't you come and and come on and raise your glass
Just come on and come on and raise your glass

Slam slam oh hot damn
What part of party don't you understand
Wish you'd just freak out
Can't stop, coming up hot,
I should be locked up right on the spot
It's so on right now

Party Crasher,
Penny Snatcher,
Call me up if you want gangsta
Don't be fancy, just get dancey
Why so serious?

So if you're too school for cool,
And you're treated like a fool,
You can choose to let it go
We can always, we can always,
Party on our own.

All right, I stole these lyrics from Pink. She is just so awesome, and her songs kick ass. Isn't it true, friends, that cancer makes us the ultimate underdogs? Let's try not to be too serious. Let's try to remember and hold on to the things that are going right, even if it's just little things like that your coffee was great this morning or that it's a sunny day (okay, those are mine, you have to get your own). I don't want to boss people around who are suffering...but man, be fucking thankful. There must be something that's right, that's good. Today, I challenge you to find it. Find that one thing.

Your milage may vary on this one, but the experience I have is that if I can find that one thing, I start finding more things. And suddenly life isn't so bad. It's worth a try, right?

And if it doesn't work, there's always prozac! Hahahahahahahaa...oh goodness.

I'm going to spend the day thinking about things that make me thankful and give me joy. And I'll post a list. You do it too. Post a link to your list in the comments because maybe something on your list also belongs on mine.

Bad Days, I haz them

I had a little fall apart last night. It was a lot of things that I've been really trying to just not think about. It was at a totally bad time, too. :( Luckily I have the most patient husband in the world.

I'm even having trouble getting all the crap out on the blog because I'm just so sick of dealing with it all.

I think it boils down to the fact that sometimes I don't like the New Normal.

I miss the old normal when I didn't have an ass wound. I miss the old normal when sex didn't hurt and dialators, what the heck are those?? I miss the old normal when I didn't worry about the results of a CT scan, or worry about whether or not I'll be around to see my kids get big and do great things.

Fuck you, Cancer. You pretty much suck, even when you're not in my body anymore.

I don't know, maybe if I can properly mourn the old normal I can fully get on with the new normal? Maybe I'm just having a bad day?

So many things are going right. So many things completely rock my world. But then there's the shadows, the things I'd rather forget. Or at least things that I don't mind remembering if only they weren't so raw still.

I think it will get to that point, someday. I hope that it will. Until then, I think I might have bad days sometimes. It's okay to have bad days, right? Bad days, I haz them.

And if you have them, that's okay.

I have more good days than bad, and so so much to be happy for and look foward to. Like...
Vegan Thankgsiving!
finishing my NaNoWriMo novel
hanging out with my kids and marveling at how much they learn
spending time with my kick ass husband
Florida Keys, baby!!!
being with friends
Christmas sewing (and just sewing in general)
skyping with family and friends (you don't have skype?? Why not????)

The list is really endless.

Thank you, readers, for walking this journey with me. I always appreciate your thoughts.

There are not many things that are more entertaining than going to see the wound/ostomy nurse here. She is very very nice, and has a lot of things to say. About everything.

First of all, my wound is doing well but since I am more than over even having a rectal wound, I think I'm going to see a plastic surgeon for a consult. There is a procedure called a flap rotation that apparently will fix it. I'm a little worried about any surgery working since my rectal wound didn't heal the first time. So we shall see. Now that we're only changing the dressing once a day (or twice at the most) with the iodoform, it's not such a pain in the ass (haha...that joke never gets old, man).

So the other stuff she said.

The office manager asked me about a flu shot. I told her we don't do flu shots. We chatted a little about my views on vaccines. Then the nurse came out to get me and the office manager said she asked me about flu shots and that I don't get one. First raised eyebrows. Nurse asked me who my oncologist was and said he would probably strongly suggest that I get a flu shot. I piped up and said that I didn't get a flu shot last fall during cancer treatments either. More raised eyebrows. I know, I'm a freaky freak. Suspecting she wasn't going to change my mind, the Nurse dropped it and brought me to the back.

I got a breast exam lecture, which was actually helpful and the first time anyone had been very specific about what I should be feeling for and what to look for, and to suggest that in addition to fondling myself, I should also be paying attention to what my breasts look like.

Then after checking the rectal wound, I asked if she would mind taking a look at my stoma. I have some ouchy skin. She said that was no problem and we chatted about wafers and ways to keep output from leaking under the wafer. Last time she tried to talk me into wearing a belt to give more support to the wafer. Um, no, I'm not wearing a belt. She asked me again today, helpfully telling me that there are lots of different sizes. Still a no, thanks. So her suggestion was to try eating more fiber to make the output more firm. I already eat a goodly amount of fiber, but okay, I can try that.

Oh! Then she asked if I'd like to talk about sex. !! ?? I said, "Um, do YOU want to talk about it?" She said only if I did, so I said, "Sure." So she asked me if I felt uncomfortable with the pouch, which I don't. And she suggested wearing a teddy that is connected at the bottom and that I could buy something from Frederic's of Hollywood. (!!??)

She talked about Beano too, in case I am embarrassed by the gas from the stoma (I'm not).

During the visit, I got the idea that she sees a lot of people who are very uncomfortable and embarrassed by having an ostomy. Although the things she was saying were kind of funny to me, the idea that somone would be so ashamed of an ostomy made me sad. I'm not ashamed, embarrassed, uncomfortable, etc. At all. Does that make me weird? Am I going to get to a point where everything catches up to me and I freak out and start feeling all bad about my ostomy?

I wish I could meet every single one of the people the nurse has worked with who have such awful feelings about their ostomies and give them great big hugs. And I wish I could talk to them and explain why I don't feel bad about mine. My ostomy saved my life. What if there wasn't an option like an ostomy for me? An ostomy isn't so bad, really. I'm not saying that to make myself feel better, I'm saying it because it's true. I still do all the stuff I did before. I keep up with my children and am intimate with my husband and go swimming and walking and whatever I want. Do wacky things happen sometimes? YES. But I've read some pretty wacky stories about poop from people who don't have ostomies.

I don't know, it's just...sad. I think you have to work with what you have. Is it always easy? No. Is it always terrible? NO. Things could be a hell of a lot worse for me than an ostomy. I have a feeling I'm not alone in this.

Big hugs, fellow ostomates. If any of you ever want to chat, leave a comment or email me. I'll talk your ear off about why we rock!

Not the greatest news of all time

Unfortunately. Not all bad, but not all good.

My liver is clear. Yay liver!!

However, there are a couple spots on my lungs. You can bet your ass I started bawling when the PA read that from the CT scan report.

BUT. The way colorectal cancer tends to spread is to the liver first, then the lungs. The doc is hopeful that the spots will turn out to be scar tissue.

The spots are too small for biopsy, so the best we can do is get another CT scan in three months so the doc can take another look. He's also going to look at the images from my Sept 09 PET scan. For some crazy reason, there's no CT scan of my chest from last September. There were chest xrays and the PET, but no CT. So the CT scan we did most recently will be the base line scan.

I spent a good chunk of the day feeling...defeated. Scared. Angry. Sad. Helpless.

Then a helpful and awesome friend pointed out to me that there are lots of things I can do between now and January. I can continue the yoga I do and meditate on being healthy. I can boost my immune system. I can keep working on getting strong through exercise. I can love my family and friends. I can live my life.

She is absolutely right.

Am I still feeling sad and overwhelmed and crappy about all this? Of course. Fuck you, Rectal Cancer and your after affects. You big jerk, you.

But I have a plan and some direction. I have a ton of support and prayers and positive thoughts. I have awesome family and friends.

So yeah. That's the deal right now.