Trying not to think too much

Chemo tomorrow. I'm not looking forward to it at all. It's so hard to go to the cancer center and get pumped full of crap that is going to make me sick. All the anticipationg and freaking out is gone, I'm just annoyed that I have to go. Irritated. Pissed off. It's not fair.

I have a feeling I can use that anger to power through it. I'll do your shitty chemo because I have to in order to get healthy, but man, I sure don't want to.

You know what else kind of sucks? Planning to be sick. Rounding up people to help with the kids because I know I won't be able to take care of them. It makes me sad every single time. Don't get me wrong, I'm so so glad there are people who can and will help. I just wish I didn't need the help.

But I'll get through it. I'm just feeling cranky that I have to do it at all.

Starting another week...

and I think I have nothing to wear.

Sigh.

It's a chemo week, so sadly that's the least of my anxieties. I have three dressing changes to look forward to on top of that.

Are those my only plans this week? Oh no. I'll be seeing friends and hopefully getting out of the house on Wednesday. But it's hard NOT to let the negatives outweigh the positives, especially when one of the negatives includes pumping my body full of poison.

So good things, good things. The dressing on my ass held strong all weekend (so far...I guess I have a handful of hours left). Orange soda today. Friends visiting on Tuesday, friend kidnapping me on Wednesday. Top Chef Masters starts!! Survivor Thursday. Sewing, sewing, sewing shorts for Reese and a pair of pants for Eli. Lentil tacos. Leftover apple pie.

I hope this stuff is enough. I won't lie, I'm having a hard time facing chemo again. It really really sucks.

But here's to a happy Monday, and not worrying too much about chemo for a few days yet.

Hey y'all! I think there's one more Friday in March, anyone wearing blue with me? Remember, March is Colorectal Cancer Awareness Month, so take a minute to remind your loved ones to get a colonoscopy if they need one, or get one yourself! It's not so bad, I promise. And you might get to see cool pictures of your colon! Good times, man, good times.

So yesterday I had a dressing change. My mother in law drove me, and the kids stayed home with Poppy. It's funny how things seem to work out for the best, because I ended up waiting way longer than I usually do. Nana had some work to do so luckily she didn't mind, and honestly, I didn't really mind either. I got one of the good rooms with a real bed and a tv (I didn't watch, but I thought it was nice that it was there). So I read magazines and enjoyed some quiet time while I waited. I didn't recognize half the people in US Weekly, I'm so out of the Hollywood loop! By the time it was my turn, my drugs were good and kicked in. Hah. It all worked out.

The dressing changes, for the most part, still hurt though. It's not as bad as it was the first handful of times, but it's not great either. The dressing was all pokey yesterday, and I ended up taking pain meds at bedtime because it was hurting me. I know this wound will heal, but why does it have to take so freaking long?? I feel like I'm dealing with so much. I try to remember that there are people in way worse situations than I am, but sometimes I still feel really crappy about everything. I'm always telling people that you can't really compare one person's pain and bad times to anothers because what's bad for someone else might not be a big deal to me. Or the things that I struggle with might be a cake walk to someone else. Life shouldn't be a contest for who has the shittiest situation. I try not to get bogged down by the "Why me?" question, but sometimes I still ask it.

Four more rounds of chemo. Hopefully not too long and I'll be free of the wound vac. I can do this. I have to do this.

Tuesday after chemo must just be my designated weepy day. I cried after the kids left this morning because I wanted to be the one to take them somewhere fun. I cried a little while after that because I couldn't figure out what to eat. Now I'm crying again because a friend sent me a sweet message on facebook asking me how I'm doing. Maybe I just need to take a nap, I don't know.

I'm so glad the kids aren't here, that this isn't a replay of the last Tuesday after chemo. I don't know why today is the day when I feel overwhelmed and sad. I'm honestly feeling better, I'm not nauseated anymore. I'm just tired, and that isn't so bad. Sometimes everything just hits me really hard, that this is actually happening, that it's affecting me so much and my family so much.

It feels good to let everything out though. Maybe I don't do that enough. Part of taking care of myself is being sad sometimes, I think, letting myself feel sad. Letting myself feel whatever it is I need to feel. It's hard to do that, believe it or not. I'm trying to be strong so much of the time, I need to give myself a break. So today I'm going to be gentle with myself, and I'll probably take that nap.

Hey, readers, be gentle with yourselves today too. I think we all deserve that.

And the surgeon said...

not really a whole lot! He said my wound is healing nicely, it looks good. That's the same thing the nurses say, and I bet I get charged less money for them to say it. Basically we're going to just keep doing what we're doing for another month, and then I'll see him again. He did say that at some point the hassle of the vac would probably outweigh its usefulness, and he expects the wound to heal completely, eventually. That was good to hear, I guess. It would have been better to hear that it's healed and I don't need the vac anymore, but I knew he wasn't really going to say that.

After seeing the surgeon, I went back up to wound care so the nurses could put the dressing back on. I was so out of it from the pain killers that I didn't even realize the nurse put the sponge back in. Needless to say, I wish it was like that all the time. My butt is hurty though, pokey. I'm hoping I can go to bed without any pain meds, I'm really only using them for dressing changes most of the time.

The really good news is that I feel so much better than I did after chemo the last time. I'm still very tired, and get worn out fast, but I'm eating food. The nausea hasn't been nearly as bad. My stoma is putting out hard little nuggets (how's that for some TMI??), which kind of hurts, but at least my guts are moving.

You know what else is nice about FOLFURI vs FOLFOX? I can drink ice water after the FOLFURI. You don't realize how awesome ice water is until you can't drink it because you get throat prickles. Same with smoothies. They're just not very good warm.

What is it about chemo weekends that makes me so weepy? Oh yeah, it's probably because it's a huge reminder that I'm sick. I manage to put it out of my mind a lot of the time, but when I'm actually feeling crummy, it's hard to forget. I get sad that I can't take the kids places and have to rely on others. I get frustrated that I can't do as much around the house. I know, I moan and groan about this every chemo weekend. It really, really bothers me. I think it's the hardest thing about having stupid cancer. There are so many things I just can't do.

I'll get over it. I know I need to rest, to let other people help. There are so many people eager to help, and I'm thankful for that.

Want an ambien update? Sure you do. So I took it again last night and I do think it helps me fall asleep somewhat faster, and it definitely helps me go back to sleep when I wake at night. Overall, so far, I think it's a good thing. That doesn't mean I like needing it. Because I don't. But sometimes you have to do what you have to do, and rest is important right now.

Now let's all send good stoma moving vibes. My guts are pretty slow right now, and I'm hoping they pick up in the next 24 hours. I hate it when my guts get slow. It makes my stoma sad when it's such hard work to output.

Chemo Thursday

I survived another chemo Thursday. It was soooooooo loooooooong. We arrived at the center a little before 10am. My line draw, as always, was an adventure. The nurse got two vials of blood and started on a third when my port decided to get persnickety. She ended up having to lay me flat and coax the blood out with a clean syringe. Otherwise, the day was uneventful. And boring because the internet connection was terrible today. I slept some, but I don't think benedryl sleep and chemo sleep are very good sleeps. The chairs aren't the most comfortable. It's kind of too bad I can get chemo at my house. Oh wait, with the pump, I do! Silly pump.

Along with various drugs for nausea, I got a script for Ambien to help me sleep. Have I talked about how much trouble sleeping I've been having lately? A lot. I have trouble falling asleep and trouble waking up in the night. I lay in bed thinking about goofy things like what I'm going to have for lunch the next day. And, confession time, I've been taking a couple oxycodone mostly in order to fall asleep in the first place. It sometimes works, sometimes doesn't. But I'm smart enough to know that oxycodone is not for that, so we talked to the nurse about taking something to help me sleep. I'd like to be off the pain meds unless I need them for pain. And dressing changes.

I'm tired now, and possibly hungry. Eric was kind enough to get me some bean burritos from Taco Bell (no cheese). I ate one and a half of those for lunch. It would be good if I could eat something tonight.

Tomorrow: the Friday dressing change. It's very important to get that one right so it works all weekend. Oh the pressure! I'm sure it will be fine. All the nurses at the wound care center are awesome and I'm not just saying that because a few of them might read my blog, haha. They really are so nice and caring.

What did I decide?

Waiting on pins and needles? I chickened out and decided to continue with the white foam. The pain, I will admit, is the biggest reason. What can I say? I'm tough, but there are limits, and I've pretty much reached mine. Eric suggested I re-evaluate in a couple weeks. He's so wise.

I've felt so good today. There's so much going right. The weather is beautiful and the kids and I were able to get outside with some visiting friends. I'm nom nom nomming my way through some delicious vegan lasagna that I was very thankful to have felt good enough to make over the weekend. For the last couple days I've been able to do more around the house which makes me feel more like normal. Sleeping hasn't been great, but at least laying in bed is restful. I get a lot of thinking done at night.

It was pointed out to me that no matter how crappy things are, I seem to put a positive spin on them. I suppose that's true. If I couldn't see the funny side I think I would be in bad shape. There are times when I feel really down, and I hate those times. That's not me at all, not normally. Since I got on the happy pills, I feel so much better. I'm glad I had the wisdom to know when to ask for some help. I want to look to the positive. I think it takes more energy to bitch and complain all the time, and it's an icky feeling getting to that place. I hope I don't spend much time there over the next two-ish months. Plus, doesn't cancer win if I get all negative? I think so, and there's no way I'm letting cancer win. Not when I'm playing the game.

If I don't update much between now and Chemo Thursday, it's because I'm busy feeling good and taking advantage of that. Knowing that I'll feel crummy for days after chemo makes me want to cram in as much awesomeness as I can while I can. My plans for the next couple days include cleaning the kid room and perhaps cutting out some shorts for Reese so that I can sew the next time I'm feeling good. We shall see.

Black or white...I hate all the foam equally

For my ass wound, there are two kinds of foam it can be packed with: white and black. The white is dense and less painful to get in and out. The black is more porous, will help things heal faster, but will hurt more to get in and out. The nurses have been using the white foam, but are now thinking we could possibly start using the black. Of course, it's ultimately up to me.

Do I want the wound to heal faster? Uh, YES. Do I want to inflict more pain on myself, on purpose? Hell no.

Sigh.

But I probably should give them the okay to at least try it. If I really can't handle it, we can go back to the white. I'm at the point now where I don't cry at the dressing change. Things are getting easier with regards to my wound. I'm just not crazy about it getting painful again.

What will I do? Maybe I'll decide next week.

Last night Eric off-handedly mentioned that I have 2 round of FOLFOX and 3 rounds of FOLFURI, and I was like, "Really, that's all?" It's the same amount of chemo treatments I had to go when I freaked out on Tuesday and it seemed so overwhelming. When he said it last night, it seemed like something I could do. Five more, I can do that.

It took me about five days to feel good enough to start doing things again. Today was day 6, and I cleaned what I could in both bathrooms, loaded the dishwasher, did some other putzy stuff in the kitchen. It felt so so good to DO something. It was awful not being able to do anything those days when I was sick, but I just need to focus on the fact that it will pass. This too shall pass. I have so much to look forward to in the next six months, so much to look forward to after chemo is over. It's just this little blip in my life, it will pass.

Anyway, I feel better today, emotionally, physically, everything. There's still some leftover weepiness, but I think that's my emotions and how amazed I am that so many people want to help me.

I know one thing, man. I could not do this without Eric. There is no way. I can't imagine it. He kicks ass with the kids, with the house, with encouraging and caring for me.

So let's hope for a good dressing change tomorrow. Anyone going to wear blue with me again? I'm thinking I'll wear blue and my rockin' colorectal cancer awareness shirt every Friday this month. Feel free to join me!

It's okay to have a bad day.

This was the best thing Eric could have said to me yesterday. It's okay to have a bad day. So often I feel like I need to keep it together, that I don't like crying in front of the kids, that I want to put on a brave face. I'm harder on myself than I am on anyone else. I'm struggling with what life has handed me, and yesterday the dam broke.

It happens. Today will be a better day. I feel like I was able to get out some of the stuff I've been holding in, I think that's good. I have cancer, man, I think I'm entitled to a freak out every now and again.

Good things can come out of bad days. I was reminded that there are so many people thinking about me and rooting for me and who want to help. I'm not alone, my family isn't alone. That's so comforting.

And now it's time for a bean burrito, and hopefully it tastes right!

emotional

It's like the dam burst today, and everything just became so overwhelming. I seriously can't stop crying. I begged Eric to come home early, and I don't even have a reason. I'm not nauseaus anymore, I'm still feeling really tired, but I'm hanging in there. Then a friend stopped by with some food and I cried to her for fifteen minutes.

I hate feeling like that, like I can't do this anymore. There are people out there who are so much worse off than I am. I keep trying to think about the positives, that I'm going to make it through this. It's just not doing it for me today. Hell, even the kids were telling me it was going to be okay, which of course made me cry more.

Why should anyone have to go through this? I appreciated my life before, I swear. When other people would complain about their husband or their life, I would always think about how lucky I was to be happy. Now I'm dealing with a great big pile of shit and I hate it, and I hate that my family has to go through it too. My kids should be outside playing with a healthy mom not sitting inside watching tv. I'm trying to be gentle to myself and like my wise friend said today, take this time to heal, but it's so hard.

Fuck you, cancer, for taking my life and turning it upside down. Just because I'm pissed off at you, I'm going to make it through the last five chemo treatments and however many wound vac dressing changes just to show you that you can't keep me down. I'm going to get healthy again, no matter what.

I wish I could post that I'm feeling awesome, but I'm so not. Chemo makes me feel like I got run over by a truck, a nausea truck. Output from my stoma started though, I'm happy about that at least. I hate being stopped up, it's so uncomfortable. I just feel so yuck.

This is going to pass, but in the moment, I have a hard time believing that this is good for me at all. I know the ultimate goal, getting rid of any cancer that might be roaming around. Can it be good if it makes me feel so bad? I want to feel healthy. I want to go for a walk with my kids and play with them. I want to take care of my house and my husband. It's sick days like today that make me feel really down because all I really can do is sit and sleep and try to eat. It sucks.

Good thing tomorrow is another day. Hopefully I'll start feeling better after getting another night's sleep. And tomorrow is a dressing change, which believe it or not, I look forward to after the weekend. For one thing, I get to shower. I get out of the house. And this dressing is sort of uncomfortable and smelly, I'm ready for a new one.

Thank you!

So many people wore blue today, it's just so awesome! Thank you, friends and family, for helping spread awareness of colorectal cancer. I hope we helped at least one person today.

I've entered the No Appetite phase of chemo. It's so weird to go from eating everything in sight to nothing looking good to eat at all. Part of it maybe has to do with my guts being so slow. I found some ginger candy at the Free Market today, so I've been eating pieces of that when I get a bad taste in my mouth. It's much more pleasant than peppermint, which is what I tried last time. Oh and I know the cold sensitivity is affecting my appetite too, at least in terms of smoothies. Do you know how fun it is to drink a warm smoothie? Not very. It's actually kind of gross, so I might lay off the smoothies until the cold sensitivity is gone.

My dressing change went about the same. I had a different nurse who hasn't changed the dressing in a week or so, and she remarked on how much less white foam was used than what she remembered using. She said the tissue looks good all the way around the walls of the wound, so that's positive. I did learn that it's not uncommon for this wound to take a year or more to completely heal closed. I won't have the vac that long, I'll only have it until the wound is too small for the vac. But a year?? That sucks. I so want to leave all this behind, to get on with life without wounds and chemo and everything. I'm anxious to get my sewing machine out and start Reese's summer wardrobe. I hope to start my gardens up once the weather is warmer. I'd like to comfortably take walks with my kids. This whole thing really puts a damper on my life.

Despite everything, I'm keepin' on keepin' on. I have to. I'm thinking about school-y things I can do with Reese and Eli. I'm thinking about how I can get them outside without doing too much walking. I'm taking over more and more of the house care, at least doing what I can. I try to think of this as a short blip in my life, that it will be over and we'll all move on with our new normal. I think there are big changes ahead, and I'm excited for that.

Wear Blue Tomorrow! and Chemo Day Update

Do you have your blue ready?? Please take tomorrow to urge loved ones to get colonoscopies if they fit the risk categories, or just encourage friends and family to pay attention to their bodies. Get thee to a doctor if something in your butt doesn't seem right.

So today was my second time with FOLFOX. After looking at my blood numbers, it was also decided that I would get the IV iron again. Things haven't changed all that much, everything is holding steady. My protein, for those of you obsessed, is within normal ranges. ;) I did lose a little more weight, but what I am able to eat is good food, so the nurse was unconcerned.

I got better anti-nausea meds, we're trying zofran as needed, and the oncologist also ordered emend, which is an IV drug and two pills. He seemed surprised that I dealt with nausea with the FOLFURI and wanted to nip it all in the bud. Apparently emend is supposed to do that.

The actual infusion was long but uneventful. It is a little weird seeing how many bags of drugs are going to be pumped into my body. I always think on the way over that it's so crazy to be basically loading up my body with poison. After the benedryl (in case I have a reaction to the iron), I fell asleep for a while. I ate a delicious vegan cheeze sandwich and drank tea. At around 4pm I got rehooked up to the little pump and Eric and I were on our way.

The somewhat amusing side effects started immediately. When I breathed outside, the air in my mouth turned into prickles. After I got home, I was getting ready to fry some tofu. I held the brick with one hand and cut slices with the other until my holding hand got all pins and needles from holding cold tofu. Even drinking room temperature water makes my throat prickly. Tonight I was grabbing a handful of frozen spinich for my smoothiee tomorrow and the prickles surprised me. Yes, my smoothie ingredients will sit out all night so they're warm by tomorrow so I can actually drink my smoothie. Lame, huh? I'll be eating and drinking mostly warm things for the next few days, hopefully the cold sensitivity will be gone shortly.

All in all, it wasn't a bad day. I'd rather not spend my Thursday at the chemo center, but it seems I'm tolerating it well. Today was #3, I have 5 left. It's nice to be able to count down something.

Don't forget!! Wear Blue Day is Friday!!! My blue pants and special colorectal cancer ribbon shirt are all ready.

So I haven't written much in the last few days. I think it's a combination of just being tired of complaining about the same old thing and feeling somewhat less sad about my situation. Thank you, happy pills, it's apparent that you've kicked in. I don't feel like crying all the time, and I'm yelling at my kids a lot less. I feel more even keel than I did a few weeks ago. It's nice to not feel so high strung and anxious, although I do have some anxiety sometimes, like before dressing changes and before chemo. That's probably normal, and I'm okay with it.

Anyway, I did have a pretty okay dressing change on Monday. That was weird to me because I had a completely awful dressing change on Friday, and it was the same nurse. I have no idea why this is. My plan is to go in anticipating that the change will be terrible so I'm not surprised if it is, and I'm pleasantly surprised if it goes well. Reasonable? I think so.

So yeah. That's what is going on with me.