Thursday, December 31, 2009

It's so good to know I have friends and family out there, thinking lots of positive thoughts, praying, sending encouraging messages. Thank you.

Amidst the storm of worry and nerves and fear, there is a calm. I feel peaceful about my decisions for my treatment. I trust the surgeon and his skill. So while I may not really want to go through with surgery and more treatment, I know this is the best thing for my health. I think that helps.

Like I've been saying all along, I have so many reasons to be brave, to be strong.

So the plan is to hang out with friends today! And if we're going to get out the door anytime soon, I need to get a move on. Happy New Years Eve Day, everyone!!!

Wednesday, December 30, 2009

Are you tired of hearing it yet?

I'm nervous about surgery. Freaked out. Sad.

I looked at the clock a little bit ago and realized that at this time in one week, I'll be done. If everything goes well, I will be in recovery by now. Hopefully I'll have Eric holding my hand, and we'll know for absolutely sure that everything is okay.

Why doesn't that thought make me feel better? Why can't I be okay with this? Why does it still make me cry?

I can't even pinpoint what's upsetting to me. Anesthesia? Having a tube down my throat? Having someone cut into me, cut parts out of me? Colostomy? Being in pain again? Staying in the hospital so long? Everything maybe?


Tuesday, December 29, 2009

It's been a long day, always ain't that right

So. The hustle and bustle of Christmas is over. We traveled safely and got to see both my family and Eric's family. Well, most of my family...the weather held us up for about six hours so we did miss one holiday gathering. It's so great to catch up with people you haven't seen in a long time. And it's quite awesome to hear how many people are reading my blog! Feel free to pass it on if there's someone you think would be interested in reading, or someone who might need the information. And in the new year, let's all get colonoscopies!! I mean, I won't because I get to have surgery instead. Take care of your asses, people!

I tried to copy and paste some song lyrics here, but I don't know what's going on with blogger. Booooo blogger. Anyway, the song is "Long Day" by Matchbox 20. Does anyone still listen to Matchbox 20? Yourself or Someone Like You was one of my most played CDs back in the day (college). I was going through my Turtlepod while driving through the frozen midsection of Wisconsin and rediscovered my Matchbox 20 love. The lyrics are worth googling if you've nothing else to do, since I'm not going to type them all out for you. I will give you the chorus though.

"Reach down your hand in your pocket
Pull out some hope for me
It's been a long day, always ain't that right
And no Lord your hand won't stop it
Just keep me trembling
It's been a long day, always ain't that right"

Check out the album, it's good stuff. "Long Day" has been in and out of my head since it popped in there yesterday. Sometimes this feels like one big long bad day.

I'm nervous about surgery. I feel like I'm on a moving walkway, and the surgery date is up ahead, and all I want to do is turn around and walk away. But the walkway keeps going, days keep going by, and before I know it Wednesday, January 6th will be here. I go back and forth between worrying about some tiny aspect of surgery that randomly pops into my head and stressing out about all the things that need doing before Eric and I take that drive to the hospital.

Speaking of the hospital and random thoughts, I think hospital time would be prime time for some sort of movie watching marathon. We have lots to choose from around here. I could do a Harry Potter marathon. Would it be ironic to host a House marathon in a hospital room? I have a couple seasons of Bones. All three Jurassic Park movies (yes, I even own the last crappy one, I'm a sucker for dinosaurs). Perhaps we should take a poll to find out what the visitors will want to see, because I will be happily hopped up on whatever drugs the nurses will parcel out.

See? That's the kind of stuff I think about. It's not all gloom and doom. But I don't think it would hurt for you to reach down your hand in your pocket, and pull out some hope for me. You know, if you're so inclined. The positive thoughts and prayers are always appreciated.

Friday, December 25, 2009

Merry Christmas!

And happy 12 days until surgery!

So our travel plans got messed up a bit because of the weather, but no worries. It's hard to feel negative when your children are enjoying their gifts and having such a great time. It really was a nice Christmas so far. I'm thankful to be feeling good, I'm thankful I had this time to enjoy my family. When we first started this whole crazy mess, we thought I'd either be in the hospital over Christmas, or would have had surgery right before. I'm glad there's no rush, that it could wait until after the holidays.

All right, party people! Have a fantastic rest of the holiday!

Wednesday, December 23, 2009

I had a chat with the surgeon's nurse today. Nothing big, she just wanted to make sure I was good to go with the prep instructions and knew when I was supposed to show up at the hospital. The surgeon gets to go on vacation until the 4th, which is why she called this week.

Time is running out, man. Today is the 23rd. 14 days until surgery. Two weeks. It's the most bizzare thing that I won't have a rectum or an anus (and a little bit of colon) in two weeks. In two weeks I'll be crapping into a bag. Well, probably a bit longer because it might take a day or two for my guts to start working again. But still. What the heck?? If you had told me ten years ago that this would happen when I was 32, I would have been in disbelief. I'm in disbelief right now.

I'm not dwelling on it too much now though. I don't have time! We're trying to get ready for Christmas, hoping we can leave Christmas morning as planned but the weather looks dicey. I'm also trying to get some cleaning done around the house, my pre-surgery nesting.

Deep breaths, life is going to go on.

Monday, December 21, 2009

Right after I was diagnosed with cancer, I went through what I can only figure was extreme anxiety. I wasn't sleeping well, I wasn't eating. I was nauseous all the time. After things got going with treatment, I started feeling better. Fear and worry about the unknown can be a powerful thing.

As the days of December rush by, I'm starting to feel more and more anxious. Sleeping has been okay. Eating...not so much. I'm nauseous and nothing looks good and blah. Don't worry, I'm taking care of myself and eating healthy foods, and doing things to help myself relax. You know, the usual, smoothies and yoga in the morning, lots of beans and veggies the rest of the day.

I debated mentioning this on my blog, but if someone else is reading this and experiencing what I am with rectal cancer, I want them to know that it's okay to feel anxious. It's okay to be inconsolable. I honestly don't think there's anything that can be said or done that will make me feel better. And I think that's an okay place to be, really. That's the here and now. I'm nervous and scared and worried. I know what's going to take place during the surgery, I'm aware of how things will most likely go afterwards. I read about ostomies and looked at pictures of stomas, I know a little bit about caring for them. We have a plan for the kids during my surgery and hospital stay, we've talked to them many times about everything. The house is clean, haha. All my ducks are in a row, but the anxiety is still there. So I can get upset about that and become more anxious, or I can just keep taking care of myself and enjoy Christmas with my family. There is room for all my feelings.

And rest assured there are MANY really great things happening around here! Reese's birthday party was a great success. I'm so excited about going home for Christmas. I cleaned out our homeschooling basket, added new games and activities, so that's all ready to go for the new year. Lots of things are going well.

Fortunately, there's little time to dwell too much on January 6th. Keeping busy does have advantages!

Saturday, December 19, 2009

I had a chance yesterday to have a cup of tea with a friend who has gone through surgery for rectal cancer. She was so awesomely open to talking about her experience, sharing about her ostomy (and showing off her supplies!), and understanding of what I'm going through. It meant a lot to me, it comforted me. Life is going to go on after all this, which is something I always knew, but it's good to be reminded. It's so easy to get stuck in "my life is over" or even "my life will never be the same."

My life will never be the same. How many times have I thought this? Not just about cancer either. I've been having "my life will never be the same" moments since, well, my whole life! Going to college, meeting Eric, moving to St. Paul, having babies, moving to Appleton...and those are just the really big things. How many hundreds, even thousands, of small events have changed my life and I didn't even realize it until much later (if at all)?

For example, our moving here was a wild ride. There were issues with the buyer for our old house in St. Paul which caused us to be delayed in getting our new house here. Our stuff was in a moving truck, we were staying with Eric's parents. One day, basically on a whim, I decided to pack up Reese and go to a La Leche League meeting. It was something I thought I would seek out after we got settled, I'd been going to LLL in St. Paul since before Reese was born. That day I met a group of amazing women, many of them still friends today.

It's natural to be a little afraid of the big changes (okay, I'll admit to being a LOT afraid). The big changes do have such an impact on our lives. Those sneaky little changes though, change is always happening. And it's okay. And life indeed goes on.

So I'm trying not to be too fearful of how my life will continue to change after surgery. The things that are truly important to me aren't going anywhere. And one of those things, my daughter, is going to start pestering me for breakfast any minute here. :)

Wednesday, December 16, 2009

Did I forget something? Don't be surprised...sigh.

I thought this whole chemo brain thing would get better after being off it for a few weeks. I don't feel like a complete and total space case anymore, but man. You'd think I could manage to get everything THAT IS WRITTEN ON THE GROCERY LIST. And yes, I wrote the list myself. And yes, I forgot more than one thing. Gah. I'm a list maker anyway, but I have to write every freaking little thing down. I swear I didn't used to have to do that.

Maybe it isn't so much chemo anymore as it is a feeling of distraction. When I need to remember something, I normally file it "in the back of my mind." Well right now, the back of my mind is pretty full of surgery and stomas and chemo and getting ready get the idea.

It's just such a distractable, inattentive state of mind to be in. I don't really like it.

Tuesday, December 15, 2009

How many days until Christmas??

10. In case you were wondering. That also means that my surgery is in 22 days.

I will admit, I had a little bit of a freak out just now (in my mind). Looking around the house, there is so much that needs to be done. Decluttering, reorganizing toys, cleaning really good...and not just for Reese's birthday party coming up, but just so it's DONE. With a bunch of help from my kick ass husband, I was able to have a nice, neat house when I started radiation. I really think that made it easier when I couldn't keep up with things anymore. We didn't have to worry about big cleaning projects because they were done, and it took a few weeks for the kids to de-organize the toys. Haha.

I don't think I've ever felt such a need to simplify. Cancer (and I suppose any life changing event) is so complex and takes over everything, and to combat that, I start throwing junk away. I start deciding what we really need and what we can donate or give away. Perhaps I ought to turn that energy loose on my fabric?

I hate to say it, but I think I'll feel better when we get the Christmas stuff put away again. Tree, you are nice but damn, your needles are constantly on the floor. Little Christmas Decorations, you are also nice, but you add to the clutter and make me feel anxious. I don't want to be uptight about stuff like that. The kids love the tree and all the decorations.

Rationally, I realize that 22 days is a long time. And it's not as if we won't have help after my surgery. It's not as if Eric doesn't pick up the slack and much more. Maybe it's a control thing for me. Since I have little to no control over my body anymore, I'm grasping at things I *can* control, like my messy house.

Sigh. It's time to do some yoga. Serenity Now!!

Sunday, December 13, 2009

Sorry about the slowdown in blog entries. Rest assured that it means I've been crazy busy NOT being radiated or poisoned or having pieces cut out of me. ;) I'm really trying to push the whole cancer thing onto the back burner, although damn it if cancer doesn't make its way to the forefront way more than I would like.

I think about things at odd times. I look at my belly and wonder how the surgeon will manuever around my "mommy tummy" and where exactly the stoma will go (I have a rough idea). When I'm doing yoga I think that after surgery it might be a little while before I can start again (restart?). In the back of my mind, I'm planning how I'm going to handle being sick again, how I'm going to juggle the kids and being tired. It still gets really overwhelming for me, I don't know if that's normal. Should I be moving beyond the freak out stage? Can I really avoid thinking about things until the 11th hour? Is that healthy?

Maybe it's okay. I'm aware of the surgery, I have information about it, I've done reading. I'm not completely in denial. Yet there are times when I still experience thoughts like a jolt. I have cancer.

I think dumb things too, like my master plan to take a bath and shave my legs on the morning before surgery. Because, dude, I don't want to go into surgery with hairy legs. That is so not sexy. And one of my other master plans (believe me, there are several master plans) to make a list of vegan food possibilities so Eric won't have to scramble. I might even buy some stuff, like good vegetable broth and vegan jello. And hard candies. I was pondering the other day if I think I want to take a chance with hospital toast and margarine, or if I should bring my own. That stuff is silly, isn't it? But I think about that. I think about what it will be like in the hospital, about what it will be like to come home, about how I might feel. I have little to no idea what the reality will be. The surgeon mentioned that some people choose to have an epidural block to treat the after surgery pain. Really? That bad, huh? It's going to have to be pretty fucking bad before I'll let anyone stick a needle in my back, man. It's bad enough that people have to stick a needle in my alien port. Blech.

So that's where my mind is, when I'm not distracted by such things as making calzones, which is what we're doing tonight. Speaking of eating, I'm having NO problem with that, and have gained like 5 lbs since chemo ended. Um, yay? I guess it means I'm no longer sick all the time. Now that I can pretty much eat anything, I'm moving back towards making good choices because I do want my body to be healthy.

Anyway, off to make calzones!

Thursday, December 10, 2009

You learn something new every day. For example, today I learned that a hot flash in the shower is a good thing, but a hot flash while I'm bundled up in my winter gear is not such a good thing.

And let the record show that I would NOT have been in need of the winter gear in the first place today if I didn't have an appointment with my oncologist. It was a lab draw, wait a thousand hours in the waiting room, see the doctor for a very short time, and get my port flushed out kind of morning.

So. The chemo doc asked the usual nosy questions about my bowels, my overall health, and my ass. My white count is a little low, but still in a normal range. We chatted more indepth about the chemo regimen I'll be on (Eric would have appreciated the doc's little talk about drug studies). There are basically two types of chemo given for my type of cancer, folfox and folfuri (I hope I spelled them right!). Each have side effects, most noteably the folfox tends to cause nerve damage/cold sensitivity and folfuri tends to cause diarrhea. Some doctors will have patients do as much folfox as they can handle, then switch to folfuri. My doctor says it makes more sense to have a regimen that a patient can be successful completing than to start with one and then switch later. He's hopeful that the nerve issues will be less or won't start as soon by alternating, and that the diarrhea won't get as bad. After our little talk, I got my port flushed and was on my way.

A couple weeks after surgery, I'll see the chemo doc for an assessment to decide when we can start chemo.

Another little gem I learned today...during surgery, instead of digging around in my arms for veins, they can use my port! I happen to think that rocks.

Then I picked up the kids, came home, and made a big pan of refried beans (from scratch, oh so good). Nom nom nom.

Other than all that excitement today, there's not a whole lot going on. My ass is healed, and aside from some occasional itching, it's like I was never radiated. I did start my yoga DVD again. I can pretty much eat whatever I want without huge bathroom issues.

Some of the time I think I'm feeling okay about the surgery, but when someone asks me about it, sometimes I get emotional. Please don't feel like you can't ask me about it if you know me in real life because I think the more I talk about it, the more my brain "gets" it. And I really don't mind talking about cancer or surgery or my eventual colostomy bag or chemo or any of it. People get so weird talking about their butts. I get it, I think I used to be that way too. I want people to be aware that rectal cancer exists, that it isn't just an old people disease, and that we all need to pay attention to our bodies, even the parts that aren't dinner table conversation.

Tuesday, December 8, 2009

Nom nom nom

The past few days, I have been hungry for anything and everything. I think it's safe to say my appetite has returned. Some of it might very well be psychological too, knowing that in a month I'll be starting chemo again and maybe won't be able to eat the foods I like. Believe me, I missed beans and vegetables and fresh fruit. Yesterday I made the most awesome green bean casserole and it tasted so freaking good.

Other than stuffing my face, I've been doing more processing, thinking, a little crying. Taking things one day at a time is a good thing for me right now. I did start back up with the yoga DVD, which helps me to feel more peaceful. Well, as peaceful as one can feel with two small children hopping around, falling over, and asking why I can't touch my toes.

And we're slowly making plans for surgery and beyond as far as caring for those nosy children. My mom will be staying with us for a while, and countless others have offered help. I feel very loved, and am thankful that there are so many people that I trust who can help with my babies.

Anyhoo, we're off for tea and to drop off the missing library book I finally found. And so the mundane will prevail, at least for today. :)

Saturday, December 5, 2009

So that's what it's called!

My surgery is officially called an abdominoperineal resection. For some reason blogger won't let me copy a link, but I'm sure you all are awesome at googling. It's on Wickipedia.

Let's try to add a picture!

So that's the deal, aside from the manly chest. I better not wake up looking like that. While I have no idea how the cutting actually takes place, maybe that's better. Eric likened it to pitting an olive (we watched a show about how olives are made today), but I don't know about that. For the time being, I'm good without the details. I can always ask the surgeon if I change my mind.

Today was a pretty okay day. I got to go to the fabric store AND the grocery store (I love grocery shopping). I sewed up a messenger bag (Christmas gifty). We ate enchiladas for dinner. After I put my children to bed, I'll probably have a drink. Good times.

Well, I reached the "last straw" of cancer thoughts and issues and fell apart last night. I thought I had a handle on things, and in some ways I do. One thing on top of another thing and all the upheaval, and I freaked out. As a person who isn't fond of change, this has been beyond hard for me. I feel like I don't have the time I need to adjust, and there isn't a way to get that time. For one thing, I have no idea how long I would need to completely process all this. And I don't know if there's a point where that even happens. I imagine that eventually things will settle down, but even then, I am not going to get MY normal back.

I'm trying to decide what's best for me in this moment. I need to be gentle to myself. I need to give myself permission to be sad. To be angry. To be frustrated. But I also need to find the happiness. The peace. The zen. Those things are doable.

One month from today, I'll be doing the old colon cleanse. Again.

For today? There is a trip to Joann's in my future, as well as some sewing. And perhaps some baking. I have a cookie recipe to veganize. ;)

Thursday, December 3, 2009

January 6th, 2010.

If you'd like to say goodbye to my asshole, make sure you do it before that date.

So we had our list of questions, but nothing the doctor said really surprised me. I've done enough reading to kind of know. He did a quickie exam, and was pleased with how well the chemo and radiation worked. We chatted about surgery, which will be done through a bikini cut, much like a c-section. Isn't that ironic? One of my biggest fears during childbirth was having a c-section and what do I get now? Crazy.

Let's see. I still have to do the colon prep, but instead of the massive jug of crappy moviprep, I get to do miralax and something else in gatorade. I'll meet with the stoma nurse the day of the surgery and the stoma spot will get marked. The surgery itself only takes about 1.5 hours. Hospital stay is expected to be about a week.

I don't know how I feel right now. On one hand, it's good to have a date. But now it's real. Someone is going to cut into me and see my guts and take out parts of me. It might take me a few days to wrap my mind around that, or at least get to the point where I don't tear up when I think about it.
Today Eric and I meet with the surgeon. I'm all freaked out about it. If we start talking about surgery, and set a date for surgery, then surgery IS GOING TO HAPPEN.

Yeah, yeah, I already know that it's going to happen. It's just that if I'm not talking about it with the person who actually does it, I can be all "La la la, things are awesome! There's no tumor in my ass! La la la."

Things that make the reality more real, I'm not a fan of you right now.

But I'm going in armed with my long list of questions, and I honestly do want to know how the surgery will go down. I want to know things like where the incisions will be, what tubes are going to be inserted, whether I'm going to wake up with my asshole sewn shut. You know, just every day, run of the mill questions.

Then again, having a date, starting to plan things, that's good for me. I'll know how much time I have to get things done. I can get my to do list going.

It's scary though, the whole idea of surgery. Anesthesia is scary. Thinking about someone cutting into my body to take parts out is scary. People can tell me it's going to be all right until they run out of breath and I'm still going to be anxious about it. I can channel that anxiety to a point (why do you think I've been so productive the past week?), but man. It's hard. One of my biggest fears about childbirth was that for some reason, the doctor would have to cut me. For someone who hasn't spent more than a couple days in a hospital, this is just all so insane.

And unfair. I have to deal with this shit because why? Who knows, right? I don't spend a lot of time considering the utter unfairness of this. It's pointless, for one thing. And for another, I'm not the only person that this is happening to. In the time I've been on the colon club message board, there have been at least 10 new members. Ten new people who either have colorectal cancer or have a loved one who has been diagnosed. It's not fair for ANY of us. A 20 year old signed up who was just diagnosed. 20. When I look back at my 20 year old self, I don't know. I would have been ill equipped to fight through cancer, to say the least. I feel that sitting around feeling sorry for myself and angry at the world isn't going to help me.

You know what does help me though? I have the most awesome friends. And they pop up at the most needed times. I'm so very thankful for that.