Sunday, February 28, 2010

March is almost here!

Although some patients never experience any symptoms of colon cancer until the cancer has advanced to a late stage, there are several signs and symptoms that you should report to your physician if you have noticed them for more than two weeks. These may indicate the presence of colon cancer:
• A change in bowel habits: diarrhea, constipation, or stool consistency changes
• Narrow, “pencil-thin” stools
• Rectal bleeding: blood in your stool on more than one occasion
• Persistent, abdominal discomfort, such as cramps, bloating, or pain
• A feeling that your bowel doesn’t completely empty
• Sudden, unexplained weight loss or loss of appetite
• Constant fatigue

From this website, which has more great information about colorectal cancer: http://www.humed.com/coloncenter/fact.shtml

Pay attention to your body, and if you notice something isn't right, get to your doctor. Is it embarrasing talking about your ass to a stranger? It can be, but you know, I have to tell you, it's worth it. I don't even want to think about the progression of my cancer if I hadn't gone in when I did.

So as we start this busy week, remember that this Friday is Wear Blue Day! Wear your blue proudly! Want to do other things tohelp? Send some people to my blog, check out colonclub.com to read some inspirational stories of cancer survivors, or just vow to pay extra special attention to your body this month. Eat something healthy, get some exercise, relax.

Here's hoping for an okay dressing change tomorrow, and I have chemo this week too. Wait, wasn't I just there?? Sigh.

Thursday, February 25, 2010

Let's NOT talk about cancer.

Let's talk about how much I covet this bag pattern: http://www.youcanmakethis.com/info/handbags/Ladybug-Diaper-Bag-.htm

Or let's talk about how I've spent hours today perusing raw food blogs and it really seems like something I could see myself doing someday. I'm already a vegan with a vitamix, it wouldn't be that much of a stretch. I would, however, need to learn how to use my dehydrator. Don't worry, I have books on my hold list that will help me.

Oh oh! We could talk about how awesome my friends are. I had a friend take my kids to the YMCA today. She already has three children of her own, but offered to also take on my hooligans. It was the sweetest offer ever, and the kids had a blast.

The Olympics! Let's talk about that! Did you see the snowboarding? Holy shit, it's amazing what some of the athletes can do. I could never ski down a hill super fast or speed skate, partly because I don't really have the desire. I have a lot of respect for people who enjoy that kind of thing and are willing to share it with us all.

We could chat about the tasty veggie burger mix I found in my pantry. I think it's from the rancid store (not really rancid food, just damaged goods or expired things...it's the best place ever), and I was pleasantly surprised at how delicious the veggie patties were with ketchup. I even got Reese to try them, and she said gleefully, "They taste like chickpea cutlets! I love chickpea cutlets!" Awww, a little future vegan!

I could mention my newest Netflix movie, Adventureland, which I don't remember putting on my list. It apparently features Kristen Stewert of Twilight fame, but that may or may not be why it ended up on the list. Ask me how I liked it after a few days, hopefully I'll get to it this weekend.

Aqua Teen Hunger Force! That's what I watched all afternoon. It's been ages since I watched some brain degenerative cartoons, it was a lot of fun.

I made soup today. Eric for some reason bought a whole bunch of broccoli, so I turned some of it into a creamy broccoli soup. It was so good, I think the kids may have even eaten it.

I think it's important once in a while to remember that I'm more than cancer, if only to remind myself that I'm still the same person I was before. It's so easy to get wrapped up in the diagnosis, the treatment, feeling crappy, etc etc etc. I don't know exactly what my life is going to bring me in the next few months, I get nervous talking about "when this is over" because there's always that chance for a setback we don't expect (hello, wound on my ass!). But man, when this is over, I'm going to take over the world! Well, maybe not the world, but definitely my kitchen to cook and the dining room table to sew.

Tuesday, February 23, 2010

Let's talk about March! Colorectal cancer awareness month!

Some facts:

• Colorectal cancer is the #2 cause of cancer death in the U.S.
• Over 150,000 Americans will be diagnosed with colorectal cancer each year.
• Colorectal cancer often has no symptom at all until it's at an advanced stage.
• Colorectal cancer is 80% preventable when detected early.
• You can reduce your risk through regular screening.
• Beginning at age 50 (or earlier if you have a family history), everyone should be screened for colorectal cancer.

So March is Colorectal Cancer Awareness Month. I'm going to start hassling everyone about it because as we all know, I have rectal cancer. I don't want anyone I know or care about to be diagnosed with rectal cancer. In my not so humble opinion, the best way to catch colorectal cancers in young people is to be open to talking about your ass. Something going on back there that doesn't seem right? Suck it up, get to your doctor, and deal with it. Your doctor has heard it all, and he/she should be totally comfortable talking about your ass issues. Chances are you'll find out you have some other thing going on, but wouldn't it be better to know early?

March 5th is a day that has been set aside for people to wear blue for colorectal cancer awareness. I'll be wearing blue that day, and I'd like to invite my friends and family to join me. When people ask why you're wearing blue, feel free to share my story, my blog address, my email, whatever. Let's get the word out that colorectal cancer is NOT just some old person disease, that young people are fighting it too. If you like fancy t-shirts with slogans on them, cafepress.com has some great colorectal cancer shirts for supportive family and friends. Blue ribbon, people!!

This won't be the last time you read about Colorectal Cancer Awareness Month. Be warned, get out your blue, share the knowledge to help someone else.

Monday, February 22, 2010

I didn't cry today...

at least not at my wound dressing change. It's slowly getting easier, but it's still painful. I don't think it will ever not be. I think I'm at peace with that. I don't feel as anxious going anymore, it's just one of those things I have to do. The nurses are all nice and good at what they do, I think that helps a LOT.

I was exhausted today, could not keep my eyes open. I don't know if that was left over from chemo or from not being able to really nap after my wound dressing appointment or what. I hope tomorrow is better. Eric got home tonight, I ate dinner, and then passed out for two hours. It felt good.

I did get a little weepy after reading the sweet comment from my last post. I used to do so much around this place, and now Eric is doing most of it. He's mopping right now. I miss doing those mundane chores that I used to complain about, like Laundry Mountain. I do what I can, today I cleaned the bathroom and folded some clothes, but it feels like so little. I'm lucky to have Eric who is willing to jump in and take care of things that need doing. Someday I'm going to take back my house, and then watch out.

I miss sewing too, creating things out of fabric, fabric shopping, sorting my fabric hoard. I will concede that the dining room is cleaner when I'm not sewing, haha. Reese is going to need shorts this summer, I wonder if I'll be able to do that? I want to so badly. Sigh.

Sunday, February 21, 2010

Five and a half months. That's how long it's been since I found out that I have cancer. I can't believe how much my life has changed, how my body has changed. How did I manage to get through the past bunch of months? A lot of times I don't feel strong enough for this. I'm struggling to stay upbeat and positive, but it's so so hard. I feel like I don't have things to look forward to, fun things. It's hard to go places and do things I'm used to doing. I went to a birthday party yesterday and was exhausted after an hour. It was uncomfortable sitting in a strange chair, I was feeling kind of icky.

I don't know. I'm going through the motions because I have to. I told Eric yesterday that I keep going to the wound dressing appointments because people keep driving me. But what kind of a drag is that to look forward to? It sucks.

I will get to the end of all this shit. The journey is just bringing me down right now, that's all.
It's been a little bit of a rough day. My stoma output has slowed way down (thanks a bunch, chemo...and perhaps IV iron too?), so I feel crappy because of that. I had intestinal cramps in the night from my guts trying to move things along. This morning I woke up with some nausea, so I took my pill for that. It sort of worked, but I still yakked up the prune juice and ginger tea I'd been drinking all morning. Nice, huh?

I got some more sleep and feel somewhat better. No more puking anyway. It's crummy feeling like this, I don't like it at all. I end up just laying in the chair, trying not to move around too much. Perhaps on Monday I'll call and get something different for the nausea.

Thursday, February 18, 2010

Double pumping it, baby, yeah!

No, it's not really that fantastic. But it's not too bad either. I can actually wear my chemo pump, so I think that will be my strategy. Yes, even in bed. I cannot imagine getting up in the middle of the night to pee and having to untangle TWO pumps hanging from my headboard. Not to mention all the tubes. Ugh. Luckily, I'll be free of the chemo pump sometime after lunch on Saturday. I think if it was the 24/7 5fu like last time, I would freak out and probably need way more happy pills than I am currently taking.

So chemo today. Man, it was a long day. We arrived at the cancer center at about 8:45 and didn't leave until close to 4pm. My blood counts and junk were a bit on the low side, so my trip today involved a shot to help my body make more red blood cells, and IV iron. It's frustrating watching people come and go, getting their chemo done way faster than me. I think we might have been the last to leave this afternoon.

As far as side effects, nothing really earth shattering yet. I'm very tired, but that could be partly due to not sleeping well last night. I thought the wound vac dressing changes would distract me totally from chemo, but I guess not. It's stressful knowing that my body is being pumped with poison. I understand that it also helps, and I sure as hell don't want rogue cancer cells settling down anywhere else. I really putzed around this morning though, secretly wishing I could just not show up. This is only the second one, and I had to give myself a talking to, rembering that I'm not only doing this for myself. I have a husband and two children counting on me getting better. I'm doing it as much for them.

All in all, it was an uneventful day. Chemo is tedious and boring, that's for sure.

Wednesday, February 17, 2010

Progress!

Another Wednesday, another wound dressing change. Today was a teensy bit easier than the last one. Maybe at some point I won't cry every time? I got some numbers today too!

When I first started with the wound vac, the wound was 5.2cm x 1.2cm, and 6cm deep.

Today it measured 5.2cm x 1 cm, and 3.4cm deep.

The nurses were pleased. It's healing from the inside out, which is exactly what they like to see. I was just happy that things are happening, it makes all the pain worth it. It's very hard work, trust me on that one.

Tuesday, February 16, 2010

You learn something new every day. Yesterday I learned that the wound vac freaking stinks and that it's normal. I was actually relieved to hear that the wound vac will have an odor because I almost drove myself nuts on Sunday trying to figure out what I was smelling. Smells that reek like ass are anxiety causing for someone with an ostomy, because we assume it's something gone horribly wrong with the appliance or the pouch. The wound nurse suggested shoving dryer sheets around the canister that collects the drainage and stuff, and it sort of works. So I'd like to apologize in advance if you hang out with me and smell something assy...it's the wound vac.

Are you on pins and needles wondering how the dressing change went yesterday? It went about how it always goes. I'm fine until the nurse has to put the sponge back into the wound, and then I pretty much lose it. I should tell the nurse that the crying is only partially due to the pain. It hurts for sure, but some of the tears are about my situation and feeling frustrated and sad and tired. I don't like to cry too much in front of the kids.

Hopefully I'll get to a point where the dressing change isn't so painful.

Sunday, February 14, 2010

Oh that's why

I couldn't figure out why I was feeling so cranky today, but then I realized that I'm staring down a very busy week. Along with three dressing changes, I also have chemo on Thursday. And for two days I'll be lugging two pumps around.

I don't know what I'm more antsy about, the dressing changes or the chemo. I don't know where I'm going to get the strength to deal with all this. Somehow I pull some out at the last minute though every time I have to do something that sucks. So tomorrow morning I'll find some determination and courage and get my ass dressing changed.

Speaking of ass dressings, man, this one has been giving me trouble. I don't know what was done differently, but it's ouchy and it's been ouchy all weekend.

And speaking of the wound vac, there was some excitement this morning as it randomly started beeping. The cause? The canister that holds the drainage and stuff was full. Gross! Eric was kind enough to change it for me. It was kind of weird seeing how much drainage and stuff is coming out of my ass wound. And gross, did I mention that?

Well, positive thoughts are appreciated for the upcoming week. I'm hanging in there, but you know, the thoughts really do help.

Oh, and Happy Valentine's Day!

Saturday, February 13, 2010

Weekend!

What with the exclamation point you'd think I have all kinds of grand plans for the weekend, right? Nothing more spectacular than watching some Olympics, making some chickpea cutlets for fast, easy lunches, and taking naps. Because that's what you do when you have an ass vacuum and are on enough pain medications that you can't drive. I know, boo hoo, woe is me. It's not that bad. We surely could go somewhere if I felt like it, but today I really didn't. Making the chickpea cutlets wore me out enough (curious about these yet?? google is your friend).

Speaking of the Olympics, shooting targets and skiing? That's pretty cool. I didn't even know that even existed. But I didn't know what curling was until a couple weeks ago either. I'm not very Olympics savvy, I suppose.

The nicest thing about the weekend? Two whole days between dressing changes. Although I don't know what the deal is with the dressing this time. It seems more hurty than the last one, I don't know if the tape is stuck on differently (or maybe stuck to some hair, ouch!) or what. The nurses are supposed to measure the wound on Monday, maybe I'll try to remember to ask them to write down the numbers for me.

The nice thing about the wound vac? I'm so wrapped up with it mentally and physically that I've hardly thought about chemo next Thursday. So reluctant thanks, wound vac. I still wish that all I had to deal with is the chemo. I expected to be starting yoga again soon, and maybe walking. I thought that aside from dealing with some chemo side effects, life would be mostly normal. I thought I'd be able to drive, and thus get the kids and myself out of the house. To say that this sucks is such an understatement.

But I'll say it anyway: this sucks. Sigh.

Thursday, February 11, 2010

I did stuff today!

No really, I did. Breakfast for kids? Why yes! Helped get kids ready to go out for the day? Of course! Was in charge of my own pain meds all day long? That's me! Made faux chicken salad for lunch tomorrow? Whoohoo!

It feels so good to be able to DO things. I've been basically sitting in this recliner for five weeks, so getting up and about is awesome. We did get one more tweek on the pain meds that should work even more effectively.

If only I didn't have to get my ass vac dressing changed tomorrow, life would be just about perfect.

Seriously, I'm not looking forward to it. The nurses suggested that each change would get easier, and as the wound heals my pain should continue to go down. My only defense is taking a crapload of drugs right before I go, which I have to say does make things more loopy. Well, what can you do when you have a gaping wound in your ass? You go to the wound care nurses, that's what. I'm glad they're so nice.

Wednesday, February 10, 2010

I survived my second wound vac dressing change! It was not without discomfort and tears, as much as I promised myself I wouldn't cry and make the nurses feel bad (because they really do seem to feel bad when I start crying). The removal was okay until the nurse had to take out the sponge that is shoved up in the wound hole. Now keep in mind I was on a lot of oxycodone, and it still hurt. The worst part though was reinserting a sponge into the wound hole. I mean it, that hurt. HURT. That was the start of the waterworks, when the nurse was trying to wedge that sponge up in there. It was not worse than the biopsy the surgeon did in his office, but holy hell, it hurt. Did I mention that it hurt?

Things settled down quickly and my pain hasn't been too bad today. I'm sure this is thanks to my good drugs. But it was so nice to be comfortable enough that I wanted to and was able to read some books with Eli. I don't think I would have had the patience or desire to do that two days ago.

Sometimes it feels like my body isn't mine anymore. All the changes since last September, the alien port, ostomy, no more rectum/anus/sigmoid colon, now this wound vac. It's just such a weird thing to think about, that five months ago my life was so different. I'm still getting used to everything. My life still has a dreamlike quality, where sometimes I shake my head and make myself remember that this is reality. There's no waking up because I'm already awake.

I wish I could do a count down on the wound vac changes, but there's no way to know how long it will take to heal.

Tuesday, February 9, 2010

I didn't throw the wound vac out the window yet. This means things are slightly better but still sucky. It's percolating away, at least that's what it sounds like to me, a coffee machine. Stuff and junk keeps going through the tube and gathering in the stuff and junk container (I know, I look from time to time, although it's getting pretty gross, so I might have to stop). I assume the machine is doing its job.

My ass is still painful, maybe not as much as yesterday, but ouch. And I get to do the whole thing again tomorrow morning? Blah. Double blah.

The good news is that we're working with doctors to get some better pain meds. The oncologist came through with something that might work better. The surgeon is supposed to call with suggestions too. It's just so putzy and difficult to get across how much pain I'm in and we have to try different meds to control it. It's frustrating because I want the pain gone like yesterday. I can't imagine living like this long term and have a new empathy for people who do.

Monday, February 8, 2010

Wound Vac in the House

And man, I hate it. It's a good thing no one told me it was going to hurt like a mother fucker, or I might have declined. Maybe. Having Eric pack my ass with gauze wasn't all that pleasant either.

All right, so Eric and I went to the clinic this afternoon. The very kind wound ostomy care (WOC) nurses were so sympathetic and nice. They hauled in a huge box which contained the supplies we'll need for this next adventure. I laid down on the table and cried while they did their work. To their credit, they tried very hard to be gentle and numbed me up with lidocaine. And before I knew it, I had a pump hooked up to my ass. I wish I could describe it better. They put a spongey type substance in the wound hole, then cover up a patch with a plasticy bandage. Oh, they shaved my ass hair first. How's that for service?? Then they used more of the spongy stuff to make a trail up to a pump connection, which is on my hip. The tube goes to a pump that sucks the wound juices away. How's that for total layman's terms? Did that even make any sense? I'm on full vicodin right now because as I mentioned before, OUCH.

Really, it hurts. The general consensus is that my pain should be better tomorrow after things get a chance to settle and my ass gets used to the suction. And I'm hearing rumblings that my pain levels should be noticeably better in a week or two, as healing starts. The WOC nurses did say that they've seen worse wounds, and although this one is in a crummy place, it will heal. Eventually.

I feel like I took about a dozen huge steps backwards. At this moment, I can do less than I could this morning because the pain is so bad. I wouldn't wish this on anyone. And I did a fair amount of "Why me" thinking while I was on that table today. Needless to say, I'm feeling down about this whole stupid thing.

But don't worry. I started my happy pills today. It might take a few weeks before I'll notice a huge difference, but I'm on the right track. Even the wound vac puts me solidly on the right track, despite the fact that I HATE IT.

Hopefully things will be better tomorrow. Sigh.

Okay, I can do this

The wonderful wound care nurse called this morning to let us know we can get in to see them early this afternoon. I'm glad things are moving forward. I'm not glad that this is going to hurt, the nurse said to take my pain pills. They also have lidocane. I know I've said this before, but I'd absolutely recommend that you NOT get rectal cancer. It's a big drag.

The other thing I did this morning was call my oncologist about getting on an antidepressant. This last round of suck has made things very hard for me. I'm crying a lot, feeling sad and overwhelmed. It's time. Just a little fun background on me, I've experienced some situational depression in the post partum variety. I'm pretty sure I had PPD after Reese was born. We had a lot going on, and we moved about 5 hours away from my family. By the time I recognized what was going on, I was pregnant again and feeling good. After Eli, it was much the same, I felt overwhelmed and snappish with the kids. I was on a generic Prozac for almost a year, until things were more under control. So I'm not opposed to taking something chemical to try to make this easier mentally. It's hard to ask for it though, it's like admitting I can't handle it (which I can't).

Anyhoo, I like that things are happening. Positive thoughts for not much butt hurting are appreciated.

Saturday, February 6, 2010

If you time it juuuuuuust right...

the packing of the ass doesn't make me want to run away screaming. I guess that's good to know for the next few days while we wait for everything to get sorted out for the wound vac. The key to the timing is ibuprofen, wait a little, vicodin and tylonel, wait until I feel loopy, then pack. If we can replicate that twice a day, I think we're silver (not golden. Being golden would involve NO ass packing).

Other good news for today, Eric gets to take off the chemo pack! This involves fun things like flushing the line and yanking the needle out of my port. I'll be glad to have the pack off, although I got so used to it the last time that it's pretty much no big deal.

It's a relief that chemo is every other week. It's a relief that we have so many people offering to help while we deal with this whole wound vac thing. It's a relief that I'm able to move around a little better, and knowing that healing is happening, slowly, but happening.

Oh get this. I read and post on colonclub from time to time, and people keep talking about their port sites being numbed before inserting the needle. No one ever offered this to me, but the last time I asked. There is this amazing spray that freezes the port site and inserting the needle is way less painful. The nurses couldn't have offered this when I was getting my port stuck every week?? It was awesome.

Finding the good in the bad, that's what it's all about!

Friday, February 5, 2010

So....technology vs. old skool. That was the decision Eric and I had to make last night about this whole open wound thing. After doing more information gathering, we decided to go with technology. There's a call in to the surgeon's nurse letting her know that we want a wound vac like yesterday. Hopefully we can get that set up today while Eric is off work, and he assured me we will figure things out with the kids and getting me to my appointments.

I'm okay with this decision. Having things heal up faster, having the wound covered, and having trained professionals see it three times a week all sound like good ideas. Having to find people to watch the kids and drive me to my appointments (I still can't drive) is going to be challenging, but you know, we did it before with Radiation. I think we can do it again, and at least it's not every day. As soon as we figure out what exactly is going on, we can get things arranged for the kids.

Thursday, February 4, 2010

Take the bad with the good, sucka

Perhaps I should have asked that the vibes and positive thoughts be concentrated on the visit to the surgeon rather than on chemo. Because on a scale of 1 to 10 on each visit, I'd have to give the surgeon a -80 billion.

Firstly, we waited. When we got to the clinic, the receptionist informed us that the surgeon had an emergency and that he was an hour behind. Really? They couldn't have called and told us to come a bit later? Anyway, that didn't happen so we sat down on the most comfortable chairs they had and waited, watched some Oprah, made snide comments about how someone could have called us. But we expected to go in, have the surgeon answer our questions, and get the "You're doing awesome!" speech.

That didn't happen either, not exactly. We did get our questions answered. The surgeon did look at my incisions. He looked at my butt stitches and informed us that they're not healing properly, that I most likely got an infection during surgery. So basically the wound is open and needs to either be packed with gauze twice a day, or I need to wear a wound vac and go get a dressing changed three times a week. And this could go on for 6 to 8 weeks. Talk about a downer.

I felt so awful finding this out. Angry, frustrated, disenheartened, sad. I was all, "Wow, who did I piss off so fucking bad that I have another thing to deal with?" You start feeling like someone is picking on you, like it's not fair at all. But you know, so far, all things considered, this has not been too rough a ride. Radiation and chemo? Not that fun, but it could have been worse. Surgery? Totally sucked, but I'm making it through. I have family and friends just circling around me to help in whatever ways they can. I have Eric who is doing so so much and is amazingly supportive. I have my kids who make me laugh and give me gentle hugs. This really could be a whole lot worse.

So you know, bad news. The challenge is to find the happy in the bad news, and I'm working on that. Keep on keepin' on.

One down, seven to go...

Well that's done. But let's start at the beginning.

After rushing around like crazy people this morning, we got to the cancer center on time. I got a needle popped into my port, blood drawn, and waited to see the nurse practicioner. Not as long as I wait to see the doc, but it was still a wait. We chatted about this and that, and at one point she asked me if I felt ready to start chemo. I almost said no, but decided that being scared was not a good reason to hold off. I cried a little bit because I do that when I'm stressed out. We decided to go ahead and were ushered to the chemo chairs.

The chemo chairs are maybe comfortable if you don't have stitches in your ass. They are easier to sit on than the chairs in the doctor's office, and also they recline. Eric and I sat down, then after evaluating the outlet situation, got up and moved. The friendly nurses got me hooked up to the first infusions, which are an antinausea med and some steroids. After that, they needed to do a blood draw. Unfortunately my port decided to pitch a diva fit and wouldn't release any blood. The nurses were baffled, and had me reclining and sitting up and breathing deeply and putting my arm over my head. They suggested an anticoagulant and I said sure. This added about half an hour to my chemo chair stay, and Eric ran out to get potato oles. The nurses tried the port again. Still no blood. They suggested taking the needle out and putting a new one in, and that one I refused. It was flushing fine, stuff was going in fine. And putting that needle in my port hurts. I had to get a poke in the arm instead, but that's not as painful.

Then the chemo was started, and it took about two hours. We sat around talking and goofing off on the internet. After that, I got hooked up to the pump and they let us go.

I don't feel much different, maybe just tired. I don't know if the tiredness is from being out and about or from the chemo. Maybe a bit of both? No cold sensitivity yet, but I haven't tried drinking anything cold. I was fine walking outside.

It wasn't that bad, although I wish the volunteers came around with vegan treats. I guess you can't have everything.

Chemo Day

Please note there was no exclamation point on the title because I am NOT excited about this at all. In fact, I'm putzing around this morning because I don't know, I'm hoping to miss the appointment? That I'll look at the clock and say, "Oh shoot, we're late. Guess we better just skip it!" Yes, I realize that's not realistic, and I would probably never do that. But deep down, I want to.

I mean, what if it really super sucks?

I'm glad Eric is going with me so I won't be alone. I'm glad my children will be well taken care of while we're gone. But I still wish I didn't have to go in the first place. I'm trying to remember that I'm doing this for my health, and ultimately that means I'm doing it for my family so my kids can have a healthy mom. And believe you me, I will be bringing this up when they are older and sassy: "Hey, you stop sassing me! I did chemo for you!" Think that will work?

Oh! I have to tell you about my stoma issue from yesterday. So I don't know if I ate too many beans or if the vicodin finally caught up with me and constipated me or what, but the stoma was working sooooooo hard but nothing but some gas would come out. I was all crampy and unhappy. I drank a lot of prune juice and a lot of water and tried to walk around. We even changed the appliance in case it was partially blocking the hole. I went to bed feeling all sad about being stopped up. But when I woke up at about 2:30am, I found the stoma had worked really hard and pushed a whole bunch of stuff out! Yay stoma!! I actually cheered in my mind because I hate the constipated feeling. I believe it's working just fine now, thank goodness. I really need to get off the vicodin and drink more water, man. Gotta take care of the stoma!

So that's your amusing stoma story for today, this Thursday, February 4th, one month from surgery, and me about to start chemo that will last for 16 weeks.

Tuesday, February 2, 2010

Today was about a hundred times better than yesterday, and I don't think my ass is any less sore. Lots of really awesome things happened. I got good sleep last night and my back didn't hurt when I woke up. Eric was able to hang out with us in the morning to make sure we all got breakfast. We had visitors to help with lunch and to be with us in the afternoon, and we had a surprise dinner drop off (that smells delicious, by the way). I was able to rest, the kids had a good day. I just feel really good about how the day went.

Is every day going to be a super awesome day? Probably not. And I think that's okay. If we never ever had bad days, how would we appreciate the good ones? In this long haul, I expect to have some bad days. But I look forward to the good days too.

The resting is paying off and my ass bleeding has slowed way way down. So yay for that!

Monday, February 1, 2010

Sometimes I cry...sometimes

That's what I did this afternoon, for a little while anyway. I cried because I'm so overwhelmed by all the help we're getting from family and friends. I cried because everyone has such kind words for me, encouraging words. I cried because I'm tired of hurting from this stupid surgery, and because I'm scared about starting chemo, and because 16 weeks is such a long long time. Some of the tears were angry and sad that I'm in this predicament in the first place. Some of them were grateful for Eric and all he does for our family. I really just let it all out. I don't do this very often. It always seems like the wrong time, I don't want to cry too much in front of the kids because it always makes Reese cry (she's tenderhearted). My kids. Dammit, I cried for them too. If you want to see who is strong and adaptable, you look at my kids. They barely know what's going on. I hate that they have to deal with all this shit.

I save a lot of this up for at night, before I go to sleep.

I can't even describe how hard this all is sometimes. And we have so much support and love and prayer and thoughts. There is so much to be thankful for, but there are times I can't help but get mired in my ass hurting or being afraid. Every single time though, there has been something that has helped lift me up. A funny postcard. A message on facebook. An email. Someone popping over unexpectedly with a meal.

I know I can do this. I have to. So I will. And every step of the rest of this journey I'll be thankful for people who are walking with me.

some advice

Listen. If you have abdominoperineal resection (APR) surgery or whatever the hell it is called (and I hope you don't ever have to, I don't recommend it), make sure you take it easy after. Don't try to be the hero and clean the bathroom when you're 3.5 weeks out of surgery because your ass will get angry and start bleeding.

Don't worry, I'm fine. The surgeon did tell us this could happen, especially if I overdid it while healing. It's not rivers of blood anyway, it's little clots and drips. But it's gross and I'm not a fan of liquids coming out my nonexistent rectum and anus. I thought it was slowing down too. Why did the state of the bathroom have to bother me so much? Why were those cleaning wipes there taunting me? Ugh.

So I'll take it easy now and not try to do too much. I wish I knew exactly what "too much" was though. Washing a pan that's in the sink? Picking up some toys? The surgeon did tell me that if it hurts, I shouldn't do it. Cleaning the bathroom didn't really hurt, so I'm frustrated that it started the bleeding of my ass.