Update from the road

Some things:

1.) I think I have an appliance that works with my stoma! Any wear time longer than 24 hours is good for me, man. The samples given to me by the awesome wound care nurse rock except the pouches are drainable (which for you noobs means there's a clip at the bottom). I'm not a big fan of the drainable pouches because they are longer than my one use pouches and peek out from under the longest of my shirts. That is so not cool. New pouches can easily be ordered after we get to our new place.

2.) Swimming! I went swimming for the first time since becoming an ostomate. It was uneventful, thank goodness. I don't know what I was worried about. My normal swimming suit covers my ostomy well, so I don't even think you can see it. I'm glad swimming is so easy because I think I'll be doing a lot of it.

3.) My ass wound might be tricky with the swimming. I feel like I need to change it after getting out of the pool, and if my Head Ass Packer (aka Eric) isn't around, that won't happen. We'll figure something out.

That's really about it. New blog that is NOT cancer focused will be here: http://lovinlivinandlearnin.blogspot.com/

I'll continue the cancer related updates here. And ostomy stuff too. The plan for you forward thinkers is to find a family doc, get a referral to an oncologist, and get a CT scan and colonoscopy in the fall. Good times, good times. I'm thinking this blog might get slow, but check me out on the new one!

Goodbyes

How can you feel so excited and happy but also so sad? I'm thrilled that we're finally going to be living in the south, it's going to be warm there, it's going to be an adventure. But saying goodbye to friends...friends who have seen me through stupid fucking cancer, friends who have seen me at my worst, friends who like me for who I am. I knew it would be hard. It just hit me today though, and I'm feeling sad. I'm a firm believer that what you feel is okay, so it's okay for me to have such opposing feelings about moving.

It took so long for me to find my tribe, to find my people, to find a community. In some ways, it might be easier in Georgia...my kids are older, I'm more confident in myself and my mothering. I'm more willing to be outgoing, to talk to other moms. I've learned so much about myself in the past few years, and I think it's made me a better person in so many ways. That will help me take chances, get to know people, go to new groups, try new things.

To my wonderful friends, you are an amazing group of women. I was serious when I said you won't get rid of me easily. ;) There's no way I could let go of such kick ass friends. I hear Georgia is a great vacation destination, hint hint. Any of you are welcome at the Georgia Branch of the Jahner Compound (we will have an inflatable mattress and some floor space in the living room!).

And to the friends I don't know yet in Georgia...I'm excited to meet you, to get to know you. Playdates, coffee, sewing and vegan food anyone? :)

Stuff and Junk

I'm sort of irritated with my ostomy as of late. There is a LOT of pancaking going on, which isn't the end of the world. However, output gets under the wafer and that makes for a sad ostomy. There have also been some middle of the night emergency changes. I don't know how I wake up just in time.

Anyway, there are some things I can do: change my diet (which isn't really a long term fix unless I just want to eat rice, bananas, and applesauce all the time), use a pouch without a filter, use some sort of lubricant in the pouch (I already do this). I can try changing appliances. It's all a bunch of trial and error.

We did try some sticky rings that you add to the back of the wafer, and I don't think I'm having as big of an issue. I'll know more when I change the wafer tomorrow.

In some ways, the whole ostomy thing is easier for me than what I used to do. I don't even think about it most of the time, except when I'm having issues. But then again, it's a constant reminder that my life is different now than it was before September 2009. Change is hard, and I still will stop short at times, shocked that this has all happened. Really, I was radiated? Really, my rectum is gone? Really, I made it through chemo? It all seems so far away. And I wonder how I did it.

And I remember that I have a lot going for me. I think I always knew that, but now it's so much more obvious.

So what's next, you ask? I have an appointment with the wound care nurses this week, wherein I will holler about my ostomy issues and see if they have other ideas. There are medical records for me to pick up before we move. After arriving in GA, I'll start looking for a family doctor, who will hopefully have the info about an oncologist.

Sheryl Crow, you are so wise...

unless you didn't write this song. Although whatever the case, I think you're wise for singing it.

Soak Up The Sun

My friend the communist
Holds meetings in his RV
I can't afford his gas
So I'm stuck here watching TV
I don't have digital
I don't have diddly squat
It's not having what you want
It's wanting what you've got

I'm gonna soak up the sun
I'm gonna tell everyone
To lighten up (I'm gonna tell 'em that)
I've got no one to blame
For every time I feel lame
I'm looking up
I'm gonna soak up the sun
I'm gonna soak up the sun

I've got a crummy job
It don't pay near enough
To buy the things it takes
To win me some of your love
Every time I turn around
I'm looking up, you're looking down
Maybe something's wrong with you
That makes you act the way you do

I'm gonna soak up the sun
I'm gonna tell everyone
To lighten up (I'm gonna tell 'em that)
I've got no one to blame
For every time I feel lame
I'm looking up
I'm gonna soak up the sun
While it's still free
I'm gonna soak up the sun
Before it goes out on me

Don't have no master suite
But I'm still the king of me
You have a fancy ride, but baby
I'm the one who has the key
Every time I turn around
I'm looking up, you're looking down
Maybe something's wrong with you
That makes you act the way you do
Maybe I am crazy too

I'm gonna soak up the sun
I'm gonna tell everyone
To lighten up (I'm gonna tell 'em that)
I've got no one to blame
For every time I feel lame
I'm looking up
I'm gonna soak up the sun
I'm gonna tell everyone
To lighten up (I'm gonna tell 'em that)
I've got no one to blame
For every time I feel lame
I'm looking up

I'm gonna soak up the sun
Got my 45 on
So I can rock on
*****************

It turns out I *am* still the king of me, and Ms. Crow, I will rock on. Thanks for the inspiration today.

Wound update time!

There's not a whole lot going on with my ass wound these days. Eric is kind enough to change the gauze three times a day, and I just go about my business. But today I went to the wound care clinic to have the nurse take a look.

She measured 1.5cm long, and 3.5cm deep. I questioned the depth because it seems to vary depending on who is doing the measuring. One of the nurses did mention that the inside of the wound is spongy, so if the measurer presses too much, the depth will be, well, deeper. Healing, however, is happening! That's good news, yo. I would very much like to NOT have an open wound on my rectal area someday.

I feel good these days. Really good. Definitely better than I felt during radiation and chemo. Infinitely better than I felt a couple weeks after surgery. My ass doesn't hurt all the time anymore. I'm not all hopped up on oxycodone (okay, I miss that a teensy tiny bit). I still get tired, but absolutely nothing like I did during chemo. The kids and I are getting out of the house and attending groups and playdates. Everyone is a lot happier, I think. Reese has said a couple times that she's glad I'm not sick anymore because she likes going places.

I don't know, I just feel different. I feel like I need to grab hold of things, of experiences, spend time with friends. I've always leaned towards the positive, but I'm finding myself seeing the great things even in shitty circumstances. Maybe it's the Post Chemo High, wherein I'm so so very glad to be done that everything else is just good. Maybe it's a change forever. I suppose we shall see. I do know that I'm thankful for this life I've been given. Whatever happens in the future, I'm glad for right now.

I almost forgot!

The other night a friend who also happens to have an ostomy invited me to an ostomy support group. I thought it would be worth checking out, so I met her there. If you're in the Fox Valley and are in need of ostomy support, check out the group at St. Elizabeth's Hospital. WCONurses hang out there, as do many very nice people (and funny! lots of laughs). I bet if you go to the St. E's website, you can find some more info. Or just leave me a little note and I'll see what I can do.

At the group, they mentioned this website: http://www.wocn.org/index.php It looks like it could be very helpful, especially if you're looking for a WCON in your area or perhaps an area of travel.

One of the things that really impressed me was how positive the people were at the group. They are able to laugh at themselves, find humor in their situation. They are willing to share information and helpful tips. They are great listeners. I hope I can continue to be as positive about my ostomy.

The other thing that was really good for me to see was people who have dealt with colorectal cancer and are still living their lives years and years after diagnosis. I like to hear about and see in action success stories. I hope to be a success story too.

The port is gone! At least, it's gone from my body. Eric asked if we could see the port after surgery and the surgeon gave it to us in a little speciman cup. So it's on Eric's desk right now, haha. Looking at it, thinking about how it was inside my body, it's a little weird.

But hey, what about cancer *isn't* a little weird?

Anyway, things went well yesterday morning. The surgery prep and recovery took longer than the actual cutting out of the port, but I'm happy with my decision to do it this way. The surgeon also took a quick peek at my slowly but surely healing rectal wound and pronounced it good. Then he did a way bad job of repacking the gauze, but perhaps I'm biased because Eric does such an awesome job all the time.

So what to do with my blog? There are still things to come in regards to my diagnosis. I'll still be living with an ostomy and that will probably provide many comical adventures. It's very possible that I'll keep this blog for teh cancer stuff and start a new blog for the life stuff. I don't know...I kind of think people come here for the cancer related updates and maybe don't want to read my babble about what kind of vegan food I'm making or what amusing thing my kids said today. I would love to do a vegan food blog or a Columbus, GA related blog. I suppose we shall see. What with all the moving stuff going on right now, I barely have time to think about it.

For now, I'll concentrate on continuing to get healthy and the whole moving thing. If you have thoughts about the future of the blog, feel free to share.

Be where you are, otherwise you will miss your life.

More wisdom from teh internets. This one came from Harmony Cafe on Facebook. Harmony Cafe is a nice little coffee shop in Appleton, and they have a vegan menu!!! How much does that rock?

Anyway, I'm going to go be with my family, eat some homemade pizza, and try not to miss a second of my life. I hope you are all able to do the same, right down to the pizza part (it is delicious!).

A story for you

Once upon a time (about ten years ago), there was a girl struggling in college to find herself, to shape her life, to make decisions for her future. She worried about a lot of silly things, like whether she would find someone to fall in love with. Finally she grew weary of the worry and decided to live life according to her goals. Teaching jobs were plentiful in Arizona, so her master plan to graduate and then move to the southwest was formed. She didn't like winter and cold, Phoenix would be perfect! Guide books and maps were purchased, money was being saved, and a trip to Phoenix to check things out was planned.

Then like a sudden bolt of lightning, someone was dropped in her path that would change her life forever. The love she had been searching for was right there, but it wasn't without compromise. The girl decided to chase love for a while and abandoned her plans in hopes that someday they could be worked into her life again. The boy and the girl fell in love and chose to spend their lives together. Although the girl was wildly happy, the desire to relocate to a warmer climate never really left her mind completely. She learned that sometimes goals and dreams are pushed aside in favor of even better things, and was at peace.

The boy and girl had good times with friends and family, but along the line thought their own core family wasn't complete. The girl birthed a daughter and suddenly the family of two became three. Raising a child was a daunting task. The need to be with family and have job security became the new goal, and so the boy and girl made a choice to move to a new place. It wasn't Phoenix, it was still cold, but sometimes the pros outweigh the cons, and she felt good about the choices her little family was making.

Five years and a second child later, the girl was delivered another lightning bolt only this time it wasn't good news. She was sick. Cancer. The boy and girl were in shock for a time, but realized that the only choice now was to fight. Through radiation and chemo, through a major surgery, through more chemo, the boy and girl held each other up, supported each other, and leaned on friends and family who were willing to walk the difficult journey. On the way, the girl learned so much about life, about people, about priorities: some good lessons, some disappointing lessons, but life lessons all the same.

One day the boy said, "Life is too short to set aside all our dreams and goals." The girl agreed. Thus began the discussion of the future, the new reality. After being on the edge of life, they saw that change was again on the horizon. It was a hard decision: stay in a comfortable place and continue to forgo our dreams and goals or take a leap to an unfamilier city and start living the way we have always dreamed? The issues were debated late at night after the children were in bed, talking endlessly about hopes and dreams and what to do.

An opportunity presented itself, and the boy and girl decided to grab hold and hang on for the ride. Although they were saddened by having to say goodbye to so many people, the little family found themselves giddy about the future in a new place. Making their dreams come true fueled the excitement. And so the boy, the girl, and their babies are on the brink of challenges, of new experiences, of starting to live life again. The strength they found together will carry them through. And no matter what sorts of lightning bolts they face in the future, they will face life head on.

*******

Okay, so I'm not a super fantastic storyteller. I hope it was mildly entertaining. Did you figure out that the girl is me and the boy is Eric? Yeah, I knew you all were smarties.

I'm struggling now, not with any of the choices our family has made, but with the reactions of other people to those choices. I don't know how to explain why it's so important to me (not to mention important to Eric) that we start chasing those dreams we've always had. Life is too short, truly, and you don't know how much time you have. I don't know how much time I have. It sure sucks to go there, to think about that, but the reality is that I *do* have a 25% chance of recurrance. It's low, but it's still there. I force myself to think positive, that I'll be in the larger group, the 75% who remain cancer free. But there's a nagging voice that says I got stuck in the smaller group when I got cancer out of nowhere, and it could happen again, that the numbers won't be on my side.

The decision to move wasn't made out of fear, wasn't made out of some crazy that we caught along with the cancer. Believe you me, the prozac makes me completely sane and very zen. Our choice was made thoughtfully, with our children in mind, with our goals and dreams as a family in mind. If it's helpful, I can list the reasons, I'm happy to do so if someone is happy to listen. We are embracing a new reality and celebrating life by living it. I don't want to have regrets, wishing someday that I had taken an opportunity.

I debated with myself for several days about this post, whether I should try to explain or if I should just let it all go. I found that I'm having a hard time and when I'm having a hard time, the best way to banish it is to journal it. I feel I've really put myself out there in regards to this whole cancer thing, but this was a hard post to write. It's close to my heart, it's close to the heart of my family. In my heart I want those close to us to understand, to be excited with us, and of course there's room for sadness. I'm going to miss the hell out of the people I've gotten to know here, friends who have become family to me.

I don't know what else to say. LIFE IS TOO SHORT. Perhaps I will revisit this with more thoughts, perhaps I'll be able to just let it all go now. We shall see.