Tuesday, May 31, 2011

Check out my new hat, man.  I sewed that.  Pretty cool, huh?

I have not been sleeping well.  I have next to no appetite.  I'm short with the kids.  It's very tempting to lay in bed reading all day.  This all sounds really familier, but I didn't really realize it until last night.  I think I have scanxiety on top of chemo anxiety.  No matter how often I tell myself the scan is no big deal, we'll take the information and go from there, hopefully it's positive because I'm pretty good at chemo...it is still really freaking me out.  I'm surprised I didn't put my finger on it until last night. 

There's been a lot going on though.  We're busy with Reese and Eric's tae kwon do.  Our homeschool group wound down for the year, and I've been contemplating taking the summer off completely or just continuing to school 2-3 days a week (not that our lives aren't full of "school"...but we do have a math book to finish).  There's a trip to the beach coming up in a month.  And getting through chemo takes a lot of my energy too.

I wish I could quit worrying.  That's what I said to Eric last night, "I wish I could stop worrying."  What am I worried about?  That the chemo isn't working?  Am I afraid of changing up what has become the routine chemo for me?  As much as I dread Wednesdays, it's a schedule and it's pretty predictable.  I don't like change, you know.

I don't know.  Maybe scans for me are just bad news, and I would love some good news for a change.  Have I ever had a good scan? 

Oh well.  Today will be a busy day.  I have some sewing to finish up, a house to clean, and children to try very hard to be patient with.  The To Do list is long, but it makes me feel better to get things done.  The chemo sick weekend is still hard for me, even after so long.

I have a run to do, y'all.  Have a great Tuesday!!

Wednesday, May 25, 2011

I forgot the numbing cream for my port site today.  A note might be in order, perhaps a passive aggressive one (do you ever look at passiveaggressivenotes.com??  Oh you should).  I really need to remember.

Other than that, uneventful chemo today.  I went in, got infused, got my appointment for next week, and Eric was waiting for me. 

Holy crap, I am tired though.  Eric asked my friend if she would keep the kids for a while longer so I could rest, and I hesitated, but I'm glad I agreed.  I'm glad I have friends who are willing to help like that.  I'm glad I have a husband who can see better than I am that I'm tired and need to take care of myself. 

And cue tears.

I think I'm okay.  Tears are cleansing, right?

All righty.  The only other piece of news I have is that the appointment with my oncologist has to be rescheduled.  Yes, it will probably put off the CT scan results for a couple days.  Meh.  I'm okay with it. 

I'm going to go back to resting.

Monday, May 23, 2011

Hey, who put that birdfeeder on my window??

Ah the things you miss during a big chemo recovery weekend!

Just kidding, I knew about the birdfeeder.  It's pretty cool, it sticks on the window with suction cups.  No birds yet.  I'll let you know.

So yes, this weekend was pretty sucktastic.  It seems that the cumulative effects of chemo are creeping in, unfortunately.  I know I've felt significantly better by Sunday afternoon in the past, but wow.  I spent a bunch of Saturday sleeping, and it spilled over into Sunday this time.  I did go out for a run Sunday morning, but it was more of a walk with a little running. 

Even this morning I feel tired already. 

Part of me thinks, "Well, just get used to being tired.  That's the way it is."  But I don't want to get used to it.  You can bet your ass I'm going to keep pushing the chemo because I know there's a point when it won't push back. 

Well, I have things to do today, which include making a quinoa salad for a pot luck, helping Reese practice her owl reading one more time, getting us ready for homeschool group, and figuring out what is for dinner. 

It's weird, this dance between real regular life and cancer. 

Saturday, May 21, 2011

Causing a Ruckus at the Cancer Center

That's what I'm good at, right?

Since I didn't have to go in for the disconnect until later in the afternoon, Eric and the kids came with me.  I went into the infusion waiting room and they were going to goof around outside.  After signing in, I heard childlike voices in the lobby, so I popped over to the entrance of the infusion center to chat with Eric and the kids.  They ended up migrating into the waiting room, sitting on some chairs right at the back.  There was ONE other person waiting.  We were laughing and the kids were showing me how they play elevator.  I was in such a horrible mood that I was glad to be laughing.

Then a nurse walked by, hardly stopped, and said, "Those kids can't be in here, they have to wait in the lobby."  She wasn't nice at all.  It sucked.  Reese got upset and started crying because she wanted to be with me.  A different nurse came over to us and asked what was wrong, and I explained that Reese was feeling sad.  She offered cookies and juice to the kids, which I so appreciated.

Yeah, the kids aren't supposed to be in the infusion waiting room.  I know.  I still think it's lame and really sucks.  I'm sure the nurses just didn't want to get into trouble. But would it have hurt for the first nurse to just show some kindness and understanding?  To say please?  To empathize with our situation? 

I wish I could explain to the nurses who don't know how sad it is that I can't laugh with my kids in the doorway of the waiting room.  And I wish I could explain how much I needed to laugh yesterday.

Thursday, May 19, 2011

I woke up this morning feeling pretty good, until I walked around a little bit.  I feel the chemo in my legs.  They are heavy.

Anyway, rewinding to yesterday, chemo went pretty okay.  Who's ready for a recap??

I got to the clinic at 9am.  My appt was apparently at 9:15.  No biggie, except I didn't get called back until 9:30am.  My doc was at the hospital doing good deeds, so no worries.  After I got weighed (down another couple pounds, not broken up about that) and blood pressured (I don't remember, but it was good) and temperatured (97.0, but I had just finished my smoothie so my mouth was probably a little cold), the nurse was going to take me to a room.  Usually she takes me to the port lady for bloodwork and a port and then I see the doc.  I asked about it because I find it's good for me to stay on top of things, but the nurse said no blood work was ordered.  Okay, that was weird.

So I sat around in the exam room (#4 if you were wondering) for a little bit and the oncologist's nurse came in and asked me all the usual questions about if I have any new meds or if I have fallen in the past two weeks.  Then she looked at my chart and expresses surprise about there not being an order for a CBC.  I said I was too.  "Well you have to have a CBC!" she said, and bustled out of the room.  A few minutes later she took me to the port lady.

I love the port lady.  She's friendly and remembers me and doesn't chit chat too much.  And she is wicked good putting in a port.  The nurses in the chemo lab are great too, but they ease the port needle in REAL SLOW.  It's like torture, and some guy even chuckled at me last time like I'm a newb.  I'm so not.  The port lady says, "Okay, look to the side, 1, 2 STICK" and it hurts for a moment, then it's in.  So I like her.

Then I saw my doctor (at like 10:00).  I asked him about something for diarrhea (sorry, that's gross) because it's slowly getting worse and if I take immodium it makes me all shaky and clammy.  He ended up giving me something else to try.  He told me to be careful with it, because he doesn't want me to get constipated.  Oh believe me, oncologist, neither do I.  I will freak out, actually, if that happens.

We chatted about my scan, chatted about my blood numbers over the past couple times, and he gave me a sun lecture again.  I need to find a hat I can wear running, I guess.  I think I have other situations covered.

Then I was on my way to the chemo lounge!

I waited there for a LONG time.  They were busy, and it kind of sucks to not have a set appointment.  There's no way to know how long it will be before I see the oncologist though.  I think people are just doing the best they can.  A little before 11am, a chair opened up.  The nurse wasted no time getting me hooked up and pumped full of pre-meds.  I was supposed to text Eric when I got started so we could kind of estimate when I was going to be done.  The benedryl went in so fast that my text was kind of messed up...suddenly I my phone screen was really blurry.

After my benedryl nap, I went to the bathroom and then heated up my lunch.  I move around a lot more than most people do.  I get bored, so I wander with my chemo tower.

I did talk to a woman probably not a whole lot older than me who was being treated for breast cancer.  It's amazing sometimes how cancer is found.  I won't share her story here, but she's a very lucky woman.  And she only has two more chemo rounds left.  I was happy for her and almost didn't want to tell her my deal but she asked, so I did.  Sometimes I think I should initiate conversations more in the chemo lounge, but it really drains me emotionally.  I'll keep the option open.  It can be lonely in the chemo lounge despite being surrounded by so many people.

I was wiped out yesterday after chemo, which is why I was scarce online.  I find if I do too much, I feel worse, especially the first couple days.  In fact, after this blog entry, I'm probably going to drag myself to my recliner for a while.  The kids are fed, so they'll be good for a little while.  Today we will take it easy.

Tuesday, May 17, 2011

Tuesday Before Big Chemo

I would say that the anxiety about Big Chemo starts to creep in sometime on Sunday.  It's pretty easy to push it away at that point.  Mondays are usually okay because we're so busy...that's when our homeschool group meets.  This morning, Tuesday morning, I woke up and I could definitely feel it.  What do I feel?  I experience a sense of urgency to finish my To Do list before I'm sick for the weekend.  I ran through the list in my head, prioritizing, shuffling, deciding what I could let go without stressing too much.

I'm tired of fighting this, so maybe I should embrace it?  It's not like the way I feel paralyzes me or makes me retreat into my bed.  I get a heck of a lot of shit done on Tuesdays.  That's good, right?  It's starting to become a routine of sorts.  We have a really great weekend, we keep busy on Mondays, and then Tuesdays we buckle down and clean things.

Honestly, I'm not looking forward to Wednesday.  But it's going to be okay.  For today, for right now, I'm feeling positive.  I think it's time to accept the things I can't change, and I think I'm doing all I can to get through the chemo sickies and stay as healthy as possible.  It will also help that I got Twilight in the mail from DVD swap yesterday.  Awwww yeah, movie time tomorrow!

Thursday, May 12, 2011

The Day After

I ran this morning.  I was all, "This will be easy!  Little Chemo is easy!  Yay!"  and after my legs turned to jelly after about 30 seconds of running I was all, "What the heck??"  I walked a little, and ran a little, and walked a little, and ran a little.  By the end, it was better.  Proof that chemo effects can be pushed through and round house kicked down?  Maybe.  I feel good that I went out and did my best and then a little more.

The kids and I are staying home today.  I'm so glad.  Sometimes I just need a break from the go, go, go that our life has become. 

Otherwise?  I feel good.  Life is good.  Smiley Face.

Wednesday, May 11, 2011

Another little chemo down!!!  This means I've finished the fourth cycle.  Two more and I can haz a scan.

It was mostly uneventful.  Little Chemo is by far easier than Big Chemo, and I'm very glad.  The nurse seated me in the back, and after she went to get her stuff, I jumped up and got my ice water.  When I got back, she was all ready to go, and the guy in a chair near me said I was trying to escape.  We all had a laugh, especially when I said, "I've considered it before!"  Because I so have.  Hah.

I don't know what is with the nurses in the chemo lounge, but they are not good needle stickers.  The lady upstairs is very fast about it, and it hurts for a few seconds.  The nurses in the chemo lounge are too slow and it HURTS.  That, and I suspect the cleaning solution wasn't quite dry, so it stings.  The guy who tried to rat me out for escaping laughed and said, "No lidocaine cream?"  I wanted to say, "Well, obviously not!"  but I was nice and the nurse offered to call some in for me.  I knew about this lidocaine cream, but up until now, it hasn't been that bad to get stuck.

Then the guy aske me how much chemo I've had.  Luckily, Eric and I talked about this just yesteday, so I knew.  He has been doing chemo since 2008.  I don't know his primary cancer, but he said it's in his liver now.  I should have asked.  It's hard because I often don't feel like chatting in the chemo lounge.  I'll have to think about this.

It doesn't matter really because shortly after that I got the benedryl and fell asleep (listening to the first CD of Rent, if you were wondering what was on my playlist).  Then when I woke up, he was asleep.  People sleep a lot in the chemo lounge.

I ate some veggie chips, watched some Aqua Teen Hunger Force, and then it was time to go.  And now I don't have to think about chemo for a whole week!  Whoohoooooo!!!!

Monday, May 9, 2011

Probably the most frustrating thing about chemo for me is how tired I get.  Today I feel mostly normal, except that silly things like chopping vegetables for a salad (delicious cabbage salad, if you were curious) make me want to crawl back into bed.  Even sitting up at this computer chair makes me tired.  I can tell when I over do it too...I push and push, then I start feeling nauseous, clammy, shaky.  Oh well, at least the salad is done.  One thing at a time, right?

I couldn't fall asleep last night.  Too much thinking.  It wasn't good thinking either.  More of "what if" types of thoughts.  I wish I could say that I always feel peaceful and think positively, but I don't.  There is just so much to lose, you know?

I can't spend time on that today though.  We have way too much to do.  So I'm going to rest for a few minutes, then move on to the next thing until I get tired again.  Happy Monday!

Sunday, May 8, 2011

Amazing Mail

I think that it is amazing, when I'm feeling down, someone almost always does something to bring me back up.  It might be a trip to Atlanta, or a funny email, or a sweet facebook message.  Today it was this beautiful lap quilt, made by a woman I've never met in person but have known for a while on a messageboard.  She's a busy lady but she took time out of her business and family sewing to make this for me.

You made my day, Bonnie!!!!  Thank you so so much for thinking of me, and for your gifts. 

The best part of the gift?  It wasn't the stuff (although man, I do love vegan chocolate and tea and suckers, and this quilt!!!!).  It was the note sent with the package, with thoughts and prayers for me and my family.  I don't need any stuff, but I sure need to know that people are thinking about us.  That's the best gift I could ever ever get.

Thursday, May 5, 2011

Chemo Recap, #4

It went fine, y'all.  Nothing surprising.  My doc was all, "Let Eric do the dishes" in response to my cracked fingers.  Eric totally would do the dishes, but he's not even here most of the day and the kids and I make a lot of mess in the kitchen.  I'll find some gloves, and maybe some better hand lotion.  Man, I hate hand lotion.  It's so greasy.

We also chatted about a scan.  The doc wants two more cycles (so two more Big Chemos), then the scan.  It's scheduled for early June.  And we'll see what we see and go from there.

It was cold in the chemo lounge yesterday.  Warm blankets all around!  The nurses are so nice, maybe because I'm so young and I hang out there alone most of the time.  I can do lots of things myself though, they probably appreciate that.  They turn around and I'm off to the bathroom, my rickety tower and all.  It didn't seem as busy but I slept a lot.

Thoughts on my pump:  I seem to forget the little bastard is there and get caught on things more than I used to.  I think it's becaue my port is on the left side, and I was so used to it on the right (but I don't regret those months I spent port free).  I'll be glad to get rid of it Friday because my little cat Oliver doesn't like it.  She usually sleeps next to my pillow at night, I make room on purpose.  When I have the pump, the tubes are right where she sleeps.  I could do without the little RRRRRR noise as well.  But it's still better than the wound vac!

The plan for the weekend is recovery, and hopefully I won't complain so much.  We shall see.

Wednesday, May 4, 2011

It's Early

I was complaining to Eric last night that the Tuesday before Big Chemo just doesn't have enough hours for me to get everything done that I want done.  You know, before I'm sick.  Yesterday was a busy day, much cleaning and cooking.  I can't relax on the day before Big Chemo anyway, so it's good there was so much to do. 

I don't know what I'm worried about.  Shouldn't this be no big deal by now?  I know I'm going to go in and it's going to take a long time.  As the time goes by, I'll gradually start feeling more and more crappy.  Thursday and Friday will kind of suck.  Saturday and Sunday will kind of suck a bit more.  Then by Monday, I'll feel better.  That's how it goes every time.  There's no reason to think it will be different.  But I don't know how to not be anxious about it.  I don't know how not to wake up in the night thinking about things.  I don't know if this will ever be better.

Maybe it's because I hate so much that it interrupts my life.  I can't do things I want to do or that I normally do.  I get tired so easily.  I just don't feel like myself.  Honest, I'm trying not to be a big baby about it.  I wish I could feel more at peace about Big Chemo.

Ah well.  It will be okay.  Hopefully my doc won't notice that I'm probably more tan than I was the last time I saw him. 

Positive thoughts and prayers for an uneventful Big Chemo today are appreciated.

Tuesday, May 3, 2011

We Invade Atlanta

I think I should tell you the entire story of how we ended up in Atlanta for the weekend.  I follow Richard Blais (winner of Top Chef AllStars) on Twitter, and early last week he tweeted that he would be at his Flip restaurants in Atlanta to sign autographs and chat with fans.  Atlanta is about two hours from us, so at first we were just going to buzz up there, just for the day on Saturday.  Then Eric, being as awesome as he is, turned it into a grand adventure.  Here's a little taste of what we did.

The main reason for the trip, going to meet Richard Blais and eat at Flip.  Flip is a boutique burger restaurant, but never fear, I found plenty to eat.  My chickpea Faux Lafal and curried roasted cauliflower were so good.  Better than that, autographs and pics with Richard Blais!!!  He was so nice and regular-people-like.  He chatted with Reese, drew her a picture, and asked us what we were up to.  I mentioned that we ate lunch at Flip, and he said, "Was it good?  Because if it wasn't, I can take care of that for you."  Oh Richard Blais, your restaurant rocks!!!!  I, of course, was all freaked out and couldn't think of anything to say or ask.  I don't meet famous people often, yo.

After the excitement of Flip, we headed to downtown Atlanta.  I love being in a big city, walking around amongst pigeons and tall buildings.  Since we were there, we walked to the Olympic Park.  How did I get so lucky to be with this great guy??

On Sunday, Eric took us to the Georgia Aquarium.  I could have sat around peering into the huge tanks all day.  My favorite fish was the whale shark.  It's almost insane to me that there were FOUR of them swimming around that huge tank.  One of the handful of times I dragged everyone back to it, the whale sharks were being fed.  Pretty cool.

And of course a trip wouldn't be the same without my babies.  I'm not sure they like fish as much as I do, but I think they had a good time.  No, I didn't intend for you to be able to see the entire contents of my nose.  Many of the pics feature me staring in wonder at the tanks.  I couldn't help it, I really do love fish and ocean stuff. 

I didn't know it until we were on our way home, but I really needed a fun weekend.  I don't always realize how stressed out I get, how stressed out we ALL get.  It was a blast to go out to eat and stay in a hotel and just see different things.  We laughed and talked and had a great time.  I feel more ready to deal with reality, that's for sure.