Wednesday, April 28, 2010

Ugh.

I couldn't sleep last night. Could it be the life water I drank or the chocolate I ate? I think it's my chemo anxiety. Yes, I has it. As I laid in bed last night, I would think of silly things like what to bring for lunch, what books I can give away, what clothes I want to keep. Then I would think about chemo. And what I wanted to get done before chemo. And how long I'm going to be sick this time. And how I'm not going to be able to drink or eat anything cold for days and days. And how it feels to sit in those chairs.

Yes, this was all despite the ambian.

I'd consider taking something for anxiety as well, but man, I'm already taking so freaking many pills. Plus, I'm almost done, right? I should be able to hold it together for a couple more weeks? Right?

I hope so.

Anyway, so tomorrow is Chemo Thursday. Let's think good thoughts for a short day and for not too many sickies. Have I mentioned how much I appreciate your thoughts? I really, really do. I couldn't ever do this alone, and I *will* pay it forward as often as I can in the future.

Tuesday, April 27, 2010

Can I bitch, please?

I know, I know, you're thinking, "What the hell is she complaining about now??" Hahahahahahaha.

Let's talk ostomies, people. Overall, I don't have a problem with mine. I think it looks little and cute, and I appreciate that it was an option for me, I really really do. It does its job and we peacefully coexist together. As long as I am wearing pajama pants.

That's where the problem comes in. I'm tired of pajama pants. The wound vac will be coming off soon (if I have my way, that is). I'd like to wear real clothes, please. Don't get me wrong, my pajama pants rock...for sleeping in and staying at home.

I was going through all my clothes today in preparation for the big move, and guess what? Some of the clothes I've been hoarding in case they fit someday now fit! That's awesome, isn't it? Except that all my pants have a waistline that sits right over my ostomy. Some of them are big enough that I can button them up and my ostomy pouch is just inside my pants. But I don't like the way that feels. It feels all crammed up in there. The one pair of low rise capris I tried on were perfect, so I know I need to seek out the low rise pants. I'm totally irritated though that so many of my clothes fit and I'm going to donate them anyway because they don't work with my ostomy. And it's all my personal preference because I would rather have the pouch outside my pants and covered by a longer shirt than tucked inside.

Maybe I just need to play around with clothes a little more. I have plenty of skirts, so maybe I'll become a rockin' skirt person, with my kick ass man sandals and some long tank tops. That would involve shaving my legs, and let's just not go there today (it's pretty scary).

I'm not stressed about my clothes. I know I'll find my own new reality style, and I've only just begun looking. It's just irritating that I FINALLY fit into some of these clothes and they're not working for me. Less clothes to move, I guess!

Ostomies aren't such a big deal. And I'm not saying that so everyone will rush out and get one to be cool like me. Not spending my life in the bathroom is so nice. My ostomy is easy to take care of and hasn't really given me many troubles. Maybe I'm one of the lucky ones, I don't know. Just in case anyone is reading who is facing an ostomy because of colorectal cancer, I want you to know that it does take some getting used to, but it will be okay. I don't talk about mine much because it's the least of my troubles. Your milage, of course, may vary!

Thanks for the bitch session. I'm going to be okay, for real. New reality, that's what it's all about.

Monday, April 26, 2010

Pelicans! And other good things about today

About three years ago, we started seeing pelicans in our area. They leave for the winter, but come back in the spring to hang out on Lake Winnebago and on the Fox River. I freaking LOVE watching them. I'm not a bird person usually, but there's just something so cool about those pelicans. Maybe it's how they seem to hover in the air on hot summer days when they fly way up high. Maybe it's how odd they look close up, and how big they are. It just amazes me to see them, so when I saw three different flocks flying this morning, it made my day.

Other things that made my day, in no particular order:

getting my dressing changed and no longer stinking like ass wound
a delicious tempeh bacon, tomato, and lettuce sandwich (with sprouts and veganaise)
finishing the Kick Ass Surfer Girl bag that I've been working on and NOT breaking my sewing machine
getting things done around the house
listening to the kids play nicely without fighting
knowing my kids had a fun morning playing and not sitting around the clinic
the awesome box of fun I packed up to send to a friend
my mouth sores are almost gone and no longer hurt
the sun is shining
my new man sandals that don't fall off my feet when I walk

I have TONS to be thankful for and glad for. I like to think I would recognize all the good things in my life even if I didn't have cancer, but there's nothing like some super crappy circumstances to make you appreciate more what good things you have.

Saturday, April 24, 2010

Sad News

I went on colonclub the other day to find out what people do about mouth sores (biotene! in case you were wondering). I read that one of the longtime and active members of the message board died. I didn't know her very well, but I remember reading her posts and thinking that she was so helpful and kind. The whole time she was fighting her own battle, but still so willing to give information or encouragement. It just made me really sad.

I don't think about death and dying very often. It's not something brought up by my doctors, who have assured me that what I'm dealing with is curable. But it's scary. This cancer kills people. It's such a sobering thought. People that I've come to know are going to die from colorectal cancer.

Even I'm not truly out of the woods yet. Doctors will be watching my liver because if it's going to come back that's the most likely place. If we find it early, then we deal with it. I choose not to dwell on it because it's something I can't control.

I tell my kids that I'll always come back, from the doctor, from wherever. But that's not entirely true, I suppose. There's always a chance that someething might happen. I struggle with what to say to them sometimes. I don't want to lie, but I don't want them to worry. Right now we have nothing to worry about. They're so little, it's hard.

I don't know. It just plain sucks that mothers and fathers are dying from colorectal cancer and leaving behind families. There is nothing fair about cancer.

If you have some positive thoughts to spare today, maybe send them to the universe for all the people who are struggling with cancer. I know it's a small thing to do, but I think it really makes a difference.

Friday, April 23, 2010

FRIDAY!!!!!!

It's Friday! Whoohoooo!

Reasons Friday is a good day:
Eric will be home for the whole weekend!
My parents are coming into town.
New dressing change hopefully means an end to Pokey Butt.
A great friend is taking me to my dressing change and we'll probably hang out afterwards.
I don't have to feel chemo sick until NEXT Friday.
My children didn't hassle me about their breakfast foods.
It's sunny outside.

The biggest thing that is not so good is that I've developed some mouth sores. They are annoying and hurt. They make it hard for me to enjoy my sandwich of choice (hummus on any kind of bread with tomatoes, sprouts, cucumbers, banana peppers, spinich and/or lettuce, if you were wondering). I read that there's an over the counter mouthwash I can use to make them better. But until then, the mouth sores are rivaling Pokey Butt for causing me irritation this morning.

Speaking of Pokey Butt, I have to remember to get the shaving done today. I HAVE TO. I hate Pokey Butt.

So here's to an excellent Friday, free of Pokey Butt for all.

Wednesday, April 21, 2010

Pokey Butt

So how's this for an embarassing TMI? Periodically, the nurses changing my dressing have to shave around the wound. That's right, they totally shave my ass. If we forget to deal with the ass hair, the tape pulls on the hair and that causes Pokey Butt. Pokey Butt freaking hurts, man. You'd be surprised how much tape pulling on butt hair hurts. A lot, that's how much.

Guess what I forgot to ask about today? Yeah. I have Pokey Butt. It sucks. Hopefully the dressing change on Wednesday will be better. I hate Pokey Butt.

Tuesday, April 20, 2010

Surgeon update!

There is none! Yay!

Not really. The surgeon had some ass emergency surgery yesterday morning and ended up cancelling on us. However, the nurses continue to say the wound looks good, it's healing and all that jazz. The morning wasn't a total loss. I did get to hang out with Eric and the kids, even though I wasn't feeling super well. It's still nice for us to be together.

Today the kids are off doing something fun with their cousins. Eli wanted me to go too, and it was really sad for me to tell him I needed to stay home to rest. It's hard, I would much rather do something fun with my kids than have to sit at home feeling crummy. It's not even that I feel sick, I just feel so worn out. Making breakfast for us was exhausting. If the kids stayed here, it's likely they'd spend most of the day watching tv. I don't want that for them.

I don't know. I know I'm doing the best thing for them, but it sure doesn't feel like it most of the time. At the same time, I feel so fortunate that we have options, that there are so many people who are willing to help. I just miss them.

The awesome news is that I seem to be shaking the whole chemo sick thing faster each time. I don't know why that is, but I don't feel nearly as awful as I did a few times ago. Just really really tired. So today I'll rest.

Sunday, April 18, 2010

Watching the world go by...

That's what I feel like on a chemo weekend. I'm too tired to do anything, and life just goes on by. I slept a lot today, some in the recliner, and some upstairs. I discovered how awesome it is to retreat to my bed in the middle of the day when I decided to go lay down yesterday. Wow, so nice. No one woke me up hollaring at his/her sibling. No one woke me up to ask me a question that could be asked of dad. I woke up to my little cat Oliver sleeping next to the wound vac (she loves that thing). It was easily the highlight of my weekend, napping in my bed.

So I'm just keepin' on keepin' on. I go from too hot to too cold, that's a bummer. My appetite is nonexistent, but I just eat whatever Eric puts in front of me. And I keep looking forward to feeling better tomorrow.

Saturday, April 17, 2010

It's a typical chemo weekend. I feel so blah. It's a weird feeling. I'm eating lots of ginger candy and Eric is doing a great job putting food in front of me so that I eat.

But two more days of this? Double blah. Where's that fast forward button when I need it?

I guess there's not a whole lot else to say. Stupid chemo. Blah.

Friday, April 16, 2010

Hey. A super special thanks to Julie for stopping by during chemo yesterday! I totally spaced posting this in my Chemo Thursday blog, but it was just so awesome. I know Eric appreciated the company, and we both appreciate the support. And our thoughts are with you guys so so often, most definitely.

So. Eric told me that I'm pretty and sexy last night and I cried. I think it was not the reaction he was looking for. It's hard to feel attractive after chemo, with a tube coming out of my ass and another coming out of my chest. Add in the constant pajama pants and my thinning hair and the ability to take showers only three times a week, it's just not a sexy combination.

It seems like this is something no one talks about. It's a point at my life when I feel that I could maybe get a pass on making a lot of attempts to look sexy. Luckily I have a kick ass hairstyle that just looks good on its own. It's just hard to think about things that would make me feel sexy when I'm thinking about what I can eat that won't make me feel sick and worrying about who's going to help with the kids. It's just not on my radar very often.

I could change that. I should change that. It's a new season, so it's a good opportunity to get a few new items of clothing that will work with my ostomy. Part of the sage of the pajama pants is the ass wound, but the other part is that all the pants I own just don't have a good waistline for me anymore. Now that my ass wound is starting to be under control, I should try some of the maternity pants that I've been loaned. I think deep down, I worry that they won't work and I'll just feel more crappy about my pants situation. And maybe another issue is that I feel safe in my pajama pants and my awesome hats. It's comforting to wear familier clothes. I don't know. It's kind of silly.

At any rate, everything has a season. This is my I'm Dealing With Cancer so I'm Going to Wear Pajama Pants season. In a few weeks I'm thinking about a new season of skirts and long tank tops and maybe even new sandels. And I'm giving my permission to others to embrace the season they're in. Everything has the capability for change, and when you're ready, make the changes you want to make! That's my life plan.

Enjoy your Friday, friends!

Thursday, April 15, 2010

I will tell you the secret to a decent chemo session. Come over here. Closer. Okay, are you ready?

Taco bell bean burritos and Yummy Earth Lollipops (the regular flavors, not that sour ones).

That's right, I said it. Truth be told, I could live without the bean burritos, but not the lollipops. It's so nice to get the chemo taste out of my mouth, that's for sure.

So it went as well as can be expected today. Eric got the nurse to agree to run the two big bags together, so it didn't take as long but it really wipes me out. I can't decide if it's worth it, getting out earlier. I feel pretty awful.

We talked with a man who has lymphoma, and is dealing with a recurrance. He said lymphoma is like that, you always have to deal with it. I admired how upbeat he was even though I know how crummy chemo is. It makes me think though, about what other people are dealing with and what I'm dealing with. I don't like to compare cancers and make a declaration of whose is worst. My worst could be someone else's good day. My good day could be catestrophic for someone else.

At any rate, I would say that today is one of my bad days. What can you do? My body doesn't like a gallon of poison pumped into it. I don't know for sure that it's a gallon, but it sure seems like a lot.

I'll be better in a few days, but right now? I just feel crummy. Stupid chemo Thursday. I hate you and am going to quit you after two more. That is it.

Monday, April 12, 2010

It's days like today when I really start to dread chemo Thursday. I feel normal today. I mean, as normal as one can feel with a smelly wound and a wound vac. I want to feel normal every day, not sick. At this point, the only reasons I'm still going are Eric and the kids. The kids deserve to have a mom for a long time, and Eric deserves to have his wife for a long time. Finishing my treatment is the best way to ensure that, my rational mind knows that. But man, I just don't want to do anymore. Having someone pump chemicals into your body that make you sick is about as far from normal as you can get.

Should I quit my whining? Lots of people have it worse than I do. Lots of people are struggling more than me. I'm lucky, I have a supportive husband, great kids, family and friends. So I'll focus on the positive, keep listening to my Lady Gaga and Black Eyed Peas and Eminem (among the other trash music I listen to, haha) and things will be okay.

Happy Monday, all!

Sunday, April 11, 2010

Doubts and things

I shouldn't go read on colonclub.com but I still keep doing it. I go there because it's a board full of people who are dealing with similar issues. There's so much information there, so much positivity and support. But there are also stories that are a bit unnerving to me. A stage III who lit up one lymph node on a PET scan after treatment was over. A stage III who developed mets to her liver. Or lungs. So many people are struggling with colorectal cancer. Mothers, fathers, regular people.

And it's scary. *I* am stage III. Although we've been assured by the surgeon that after treatment this will be done and over, holy shit, what if it's not? I don't pay attention to statistics because I'm not really a numbers person. I don't know the percentage of survival of my type of cancer. It's something I choose not to think about often. As of right now, I'm in the category of No Evidence of Disease, until a scan shows otherwise.

So what do you do? Do you live your life in fear of cancer? I'm sure some people do that. I can't do that. I have to be positive about my future, about the future of my children. So I'm choosing to assume the best, that when I have my last chemo treatment in May, that I'm done. That we can move past this, leave it behind, do things we as a family want to do.

Our family made a big announcement a couple weeks ago, big exciting news that we're moving to Memphis. I wish I could express properly how freaking thrilled we are to have this opportunity. I think my mom said it best when she told me she saw a twinkle in my eye that she hasn't seen for a long time. It's time for new things, new places, and new experiences. And it doesn't hurt that the weather will be warmer. :)

Lots of people, friends and family alike, have expressed concern that we're moving too fast, that we're rushing into this, that maybe we should wait. Wait? Well, I guess we could do that. But I think it goes back to either shrinking away waiting for something scary to happen or being bold and living life. If there's one thing I've learned through this whole mess is that nothing in life is absolute. As far as I knew, I was healthy in August. In September, I had cancer. No one could have predicted that. Life does that, it throws things at you that you don't expect. You can be positive about it or negative about it. You can let the worry of bad things happening hold you back, or you can be brave and move forward. Eric, the kids, and I are choosing to be positive, for us there's no other option. For me there's no other option. I'll be honest, I can't handle the stress of negative thinking.

Do I have doubts? Of course. Closing this chapter of my life and going forward is a little scary. Being diagnosed with cancer changed my life in a bad way, but I can choose to proceed in a good way and I'm going to. Fuck you, ass cancer. You don't get to rule my life. I do.

Thursday, April 8, 2010

Snow????

It totally snowed here last night/today. We woke up to several inches, which delighted the kids but not me. However, I was glad that it happened this week and not on a chemo (FOLFOX) week. The cold sensitivity is crummy, but it's even worse when things like car doors and door knobs are cold. It hurts my fingers!

I can drink a smoothie though, finally. I'm not quite ready to try ice water but luckily I haven't craved it like I do when the weather is nicer.

I appreciate all the kind words and comments after my last post. I don't know what it is about the Tuesday after chemo that just causes me to fall apart, but that's what I seem to do. No matter how many times I send the kids off to do something fun so I can rest, it's still hard for me. The most important thing for me is that my children are happy and well cared for, and I know when they're with friends or family, they really are. It has nothing to do with the quality of their care, it's all me and how much I want to take care of them like I used to. It's just hard. And it almost always makes me cry when I think too much about it.

Ah well. How about some good news? The ass wound is, in fact, healing. 3.5cm long and 2.5 cm deep. Considering it was 6cm deep when I first went in, I'd say that's pretty good. Hopefully I'm on track to ditch the wound vac at around the same time I say buh bye to the chemo center for good.

And three chemo treatments left! Today, it seems like no big deal. Hopefully I can hold on to that feeling for a few days.

Well, it's time for Top Chef Masters and it's Survivor Thursday!!!!!!!

Tuesday, April 6, 2010

Sometimes I find myself really jealous of healthy people. I suspect the average person doesn't give a second thought to how lucky they are to be just doing their normal stuff, going about their day, their body doing what it's supposed to do. I know I didn't think about it, before. Now I want to be healthy so bad, and do the normal things I used to do. I hope people can understand what a huge deal it is to be healthy, and they won't waste it. One day you can be just going about your business, feeling pretty good, and then the next day you get told you have cancer. It happens that fast.

So I'm jealous today. Jealous of anyone who doesn't have a wound vac attached to their ass. Jealous of people running around with their rectums. Jealous of those who don't have to go to chemo and get sick. Jealous of people who don't have to think twice about going out and doing something fun with their kids.

I struggle with this being the "right" mindset. I wrestle with feeling that life is unfair, fight to stay positive. But you know what? It's okay to just be. It's okay to just feel what you feel. It's okay to wonder why and to let the tears flow. It just is sometimes. Today is one of those days that it just is. The good is good and the bad is bad. It just is.

Today I can accept that it just is. I'm making a choice to be comfortable with how I feel. And tomorrow will be a better day.

Sunday, April 4, 2010

I'd Like to Over Share with You

In honor of my 200th post, I'd like to announce that after a nearly two day strike, my stoma is now outputting hard little nuggets. Apparently the prune juice I'm forcing down is doing its job. Yay prune juice, even though I hate you a little tiny bit because you make me feel yakky. I tend to get stressed out when my stoma slows way down after chemo. It's so uncomfortable when it doesn't work properly.

Can you believe that we've been chatting about cancer for 200 posts? While I'm glad that this blog has gotten to so many people, I'm sad that I had to start it in the first place. I'm sad for those readers who are coming here for information or maybe to just read about a similar experience they are having. No one should have to experience what I have, from the shock of finding out I have cancer to the chemo sick.

I don't know that I've changed from my experiences so far. I like to think I'm still the same old me, but maybe I'm not. I don't feel stronger or more resilient. I don't feel braver or more appreciative of my life. I was happy with my life before cancer. I'm happy now (when I'm not chemo sick).

Saturday, April 3, 2010

Oh you know, it's chemo weekend

Blah. Blah, blah, blah.

Okay, so I don't feel as awful as I have in the past, but it still sucks to feel sick at all. I just don't feel like myself, I'm tired, I have no appetite. I feel squirmy uncomfortable. It's hard to explain. I would love to fast forward to about Tuesday. Obviously that's not happening. Bummer.

It's even hard to think about having three treatments left. It sounds like so little...when I'm not in the midst of a chemo weekend. Right now, three more treatments makes me want to cry. And that makes me feel like kind of a baby because I know I don't have it as bad as some other people do when they have chemo.

I just feel so...blank. Chemo sick is so weird. Sigh.

Thursday, April 1, 2010

Well that's over

Chemo is over for one more time. Three more left!

Side effects started immediately, which is a bummer. The air is too cold, room temperature water is too cold. Water from the faucet is too cold on my fingers. It's so weird.

Overall it went well today. It went fast, I'm glad about that.

There's not much else to say about chemo. Booo chemo!