Wednesday, June 29, 2011

Guess Where I am NOT today??

Cancer Center!  I'm not there!!!!!!!

I'm skipping out today.  Yes, Little Chemo doesn't kick my ass like Big Chemo does, so maybe I could have done it.  However, I really feel like I needed a no chemo break.  Does this make me a huge baby?  Whatever.  I'm glad and totally happy with this decision.

I am also freaking excited to be escaping to the beach, which is like 5 hours from the cancer center.  There's just something about the beach for me.  I love water and water creatures and sunshine.  Don't worry, I will wear lots of natural sunscreen and wear my gigantic hat. 

I'm so excited!!!!!!!!!  There aren't enough exclamation points to even express it.  According to my several pieces of paper with lists, we should be almost packed up.  I'll bribe the kids to help me pick up the house, and we're golden.

Did I mention the excitement? 

Also, the last time I saw my doc, I complained about not sleeping despite a little sleeping pill.  He increased the dose, and it has made such a difference.  I fall asleep faster, I don't wake up for hours in the night.  Now if I could get my kids to sleep later, haha.  Anyway, I almost wonder if lack of sleep was a bigger factor in my mood and stress level than my crappy cancer situation.

So have a nice 4th of July weekend!  Look for pics sometime after we get back.  :)

Friday, June 24, 2011

Sometimes I feel so negative

I'm really not, at least not all the time.  This morning I was running and thinking about how amazing our life is.  We live in an absolutely beautiful community, people are nice and friendly.  The kids are healthy, they're happy, they're learning and growing every day.  We have the things we need and often are able to get things we want too.  There are amazing travels coming up, and I'm so excited to meet friends I've known for such a long time.  The friends we've made here are the most wonderful people. 

So yeah, while shitty things happen, I think the good often outweighs the bad.  It's hard for me to remember that when I'm wallowing in the sick of a Big Chemo weekend. 

I just wanted everyone who is reading to know that I'm good.  I have bad days, but I'm hanging in there.  I'm tough.

Oh hey...if you have a moment, check out the linkie about the Bone Marrow Donor Registry.  Please consider signing up, it's really easy, and who knows?  You might be able to help someone who is struggling.

Wednesday, June 22, 2011

The Big Day! Scan Pictures!!!

Well, not really.  The computer used for looking at scans was acting up, so no pics.  The doctor did consider the stability of my tumors a positive thing, and noted that there are no new ones.  So evil chemo, you are working, and I guess I will stick with you for a handful more times.  The doc suggested a scan in a few more months to get another peek.

I bitched about my sore fingers and my incredibly icky eye and my not sleeping.  Lotion, antibiotic eye drops, and an increased sleeping pill dose.  And next time I go in there, I'm bringing my gigantor hat.  So no new remedies really, just encouragement and a gentle, "These side effects are not too bad" which is probably good that I hear.  I think the doctor knows I'm hardcore and can do this.  It's good to have confidence like that.

Since we're going on vacation next weekend, I decided to skip chemo altogether next week.  Honestly, I need a break, even if it is just pushed out one week.  The doc and Eric backed me up, of course.  I got many warnings about the dangers of sea water and the doc fretted about antibiotics.  He warned me not to eat any raw fish.

Ahahahahahahahaha.  I was all, "Eww, I don't eat meat."  This led to the following conversation:

Doc:  You don't eat meat?
Me:  NO.
Doc:  Oh, you're vegetarian.  You eat eggs?
Me:  Nope, no eggs.
Doc:  What?  I thought vegetarians eat eggs.  What about milk and cheese?
Me:  NO, I don't eat any of that stuff.
Doc:  Well that's why your eye is so sore, you need protein.
Me:  I use protein powder in my smoothies, I eat tofu, tempeh, beans, I'm good on protein.
Doc:  Ahhh you eat tofu, okay.  You should drink miso soup.
Me:  I love miso soup!  Sushico has the best miso soup.
Doc:  You can make that at home you know.  Make it yourself.

So I'm supposed to drink some miso soup.  I guess I'll have to look that up.  The doc insisted it was easy and sounded incredulous that I paid for it at a restaurant.  Otherwise, I really think my nutrition is fine.  I'm going to try to add more nuts to my diet, and I'm considering adding in some raw foods days here and there when I can.

Let's see.  Oh I didn't tell you about the blood drawing nurse!!  The normal nurse I have must be on vacation still, so this other nurse was helping out.  She wouldn't let Eric stand in the room (even though it's a huge room).  It bothered me.  Eric, if he's able, is with me and has been with me.  The nurse said, "Are you scared?" and kind of laughed.  She didn't do a bad job, but I complained to Eric anyway.  I hope the other nurse is back the next time I go in. 

The wait for a chemo chair was long.  Going in mid-morning is kind of sucky.  Chemo was uneventful, except the nurse there was having fits over the infusion machine.  It wouldn't cooperate with her at all.  I guess it doesn't like chemo either, hahahahahahaa.  I read a scary Dean Koontz book while I waited (I don't know why I read scary books).  After my benedryl nap, I watched some Seinfeld.

I will post vacation pics after we get back.  If you don't hear from me, it's because I'm busy having fun and hugging my family and working on feeling positive and relaxing. 

Monday, June 20, 2011

Side Effects

Let's complain about side effects!  Yay!

Starting with the most annoying...

Dry Erbitux Skin.  Around my eyes.  It's red and ouchy.  I have lotion for it, but meh.  It's still there.

My mouth hurts.  Things I like to eat hurt me.  I have magic mouth wash for it, but meh.  Still there!

Hair falling out.  This one probably makes me the most sad and also the one I feel the most silly being upset about.  There could be a lot worse things than losing some hair.  I've always loved my hair though. 

Cracking skin on my fingers.  The good news on this is that I'm down to three.  Whoops, I found another one.  As soon as I get them healed, more show up.  :(

Itchy butt wound area.  Yeah, still dealing with that pesky butt wound.  Is it healing?  I don't know!  It's just there, it gets packed with gauze once a day, and it gets Erbitux irritated from time to time.  I never thought we'd be buying diaper cream after the whole baby stage.

All over my body, my skin is dry, dry, dry.

Chemo brain?  Check.

My appetite is back though!  Except everything I eat hurts my mouth!  :(

I'm feeling a little cranky today about all this nonsense, in case it's hard to tell.  I try not to let it all get to me, but it's weary-ing.  I feel a little bad complaining because overall, chemo isn't too bad for me.  I know it's awful for others.  I know other people who are in much worse situations than I am.  But at the same time, my feelings should be okay too. 

So here's to my feelings and your feelings and everyone's feelings.

Sunday, June 19, 2011

And another Big Chemo weekend is coming to a close.

It wasn't too terribly bad.  Saturday was busy, so whenever I wasn't doing something I was sleeping.  I ate ramen, begged people to go to Sonic for slushies, ate a lot of lifesavers, you know, the usual.  I think the thing that got me through this weekend was knowing that I won't have Big Chemo until after our vacation.  I'm not sure how I'll get through the next one, but one day at a time.

It's Father's Day today, and I'm so thankful for Eric.  I can't imagine going through this with anyone BUT him.  I don't even have words, he's just the best.  I want us to grow old together so badly. 

Anyway, my mouth hurts and I'm tired.  I think I'll go do something that has absolutely nothing to do with cancer, like investigating homeschooling books for the fall.  I hope everyone else's weekend was awesome!! 

Thursday, June 16, 2011

As requested by many, a pic of the old time chair I sat in last week.

No worries, y'all, I got a regular chair this week.  It was actually in a great location...right next to the blanket warmer AND the bathroom!  Wheeeee!  I didn't take a pic of that though.  I feel weird taking pictures in the chemo lounge because there are so many people.  I guess you'll all just have to visit me to get the real feel.  ;)

Yesterday went fine.  I got called back right away and my nurse was awesome.  I watched Clerks (well, bits and pieces of it, thank you, Benedryl) and paged through my new Harry Potter inspired cookbook.  I even chatted with a woman with many questions about my chemo (she has breast cancer, a much different regimine).

So yeah.  Today will be resting.  Which is what I'm going to do now.

Wednesday, June 15, 2011

I promised myself I wasn't going to cry...

but I did anyway.

I've been doing this chemo thing for a while now.  You'd think I'd be able to not get all stressed out and anxious.  Yeah, no.  I still do. 

I don't know how to NOT feel the way I do on the Tuesday before Big Chemo.  We were even crazy busy yesterday.  The kids and I went to La Leche League, then shared some vegan cherry cheezecake at the awesome vegetarian store.  We went to storytime at the front office.  I made a pasta cauliflower sauce hotdish for dinner.  But I still got upset, I still cried to Eric.

I know the chemo is working, shouldn't it be easier to go?  It's so not.  And it's very predictable.  We have the meds down, I'm not throwing up or anything.  I probably have a much easier time with chemo than many people.  They why do I feel like running away today?  It's a good thing we don't have two cars this morning.

I'm at a loss.  Maybe this feeling is just something I have to get used to.  Maybe it just won't go away.  It's very hard to go do something that puts me on my ass for the better part of five days.

Here's hoping today is uneventful (and that I get a better chair!).

Monday, June 13, 2011

Sometimes it's hard to find balance.  I think that's true of everyone, not just me who has cancer.  I told Eric last night that one of the most frustrating things for me about my life right now is how much time the Cancer Center sucks up.  Every Wednesday.  Every other Friday.  Feeling sick for the better part of five days.  Spending some of my Feel Good days preparing for when I'm going to be sick.  Trying to see friends as much as possible while I'm feeling good.  Squeezing in sewing and homeschooling.  Going out and exploring our surroundings.  Cleaning and baking and laundry.

I'm not saying that I like or dislike these things.  I want to do everything, but even before I know that wasn't possible.  Prioritizing helps, of course, and I find that overall I'm good at that.  But it sucks to put things I really enjoy at the bottom of the list.  Or to find that things get pushed to the bottom inadvertently in favor of things that probably aren't as important.

It's always good to have a reality check, like the one I got from Eric yesterday.  I was all ready to sew all afternoon, ignore the arguing kids, and just do my own style of moping because I have Big Chemo this week.  Then Eric said we were going somewhere and doing something.  At first I admit I wasn't thrilled, but I decided to go along with it.  After a little driving around, we ended up at the Columbus Museum looking at cool Civil War stuff and laughing our asses off as the kids played with giant legos.  We went out to eat to celebrate Father's Day.  And you know, it was a really fun afternoon.  I'm glad Eric took the lead and got us out of the house.

So, you know, balance.  Is every single thing I want or need to do going to get done?  Probably not.  Is it worth it to shift the prority list and be open to adventure?  Absolutely.

What's in store for today and tomorrow?  Oh you bet there's a list.  But I'm going to try shifting things around, maybe take the kids for a walk and a swim instead of freaking out about their incredibly messy bedroom.  We'll figure it out, and it will be okay.

Thursday, June 9, 2011

Mostly Stable Tumors!

Ready for some good news?  Eric and I were able to get a copy of the CT scan report yesterday.  We'll go over the images with the doc in two weeks, but MOSTLY STABLE.  Chemo is working, it seems.  That makes it a little easier to go, I must say.  According to the report, my other organs look good.  There seems to be activity in and around my original diagnosis site, but that could be due to radiation/surgery, or if it's a recurrance it's still stable too.

I'm relieved.  I needed some good news on the cancer front. 

I'll feel even better after speaking to the doctor and re-evaluating the plan.  He should have specific measurements and numbers of tumors. 

My CBC numbers were good too, even after Big Chemo last week. 

I have a love/hate relationship with my body being so responsive to treatment.  It's not really a skill I enjoy bragging about, but I guess it's a helpful skill.  I have six more Big Chemo treatments left if we go with the plan as-is.  I can do that, especially knowing that it is helping.

Otherwise, yesterday was pretty uneventful.  I complained about my ouchy mouth and my ouchy cracked fingers to the physician's assistent.  She was appropriately sympathetic, but since I'm already doing things to help that, there wasn't much she could do.  She did tell me that I don't have to swallow the magic mouthwash, which I didn't know (the directions say to swallow, and I've never been much of a fan of swallowing...).  I'm not super rashy from the Erbitux.  I should get a sticker for being the best cancer patient ever, man.

Oh, but when I got to the chemo lounge, things got a little interesting.  The chairs were all full when I arrived, so I was offered a "regular chair" off to the side.  The computers were down and things were taking longer than usual (if you can possibly imagine that, based on how long I usually wait).  The nurse working with me wanted to get started and offered to let me swap chairs when one became available.  So I sat in this old time chair, which Eric said later was probably what they used before they got the fancy chairs they have now.  The nurse got my pre-meds started and no chairs had opened up.  He asked if I'd be okay sitting in the old time chair (he didn't call it that, obviously), and I wasn't sure because it doesn't recline.

Okay, now I don't think I'm spoiled, but I also feel that I NEED to be able to recline when the benedryl hits.  The nurse said, "Oh, this reclines!"  It sure did, but it was kind of scary because it tipped way back, and if I moved wrong, it fell forward to an upright reclined position.  I stayed where I was the whole time.  Little Chemo isn't worth picking up and moving.  And it turned out okay.  I probably slept less than I usually do, but that's not a big deal.

Try to give me one of those old time chairs next week?  Um.  NO.  But who knows what I will get.  The scheduler claimed they didn't have any open slots until 10am.  What, what??  I wonder what they would do if I showed up at 8am.  I could blame it on chemo brain.  Oh so sorry, two hours early. 

So after chemo, Eric, the kids, and I did some errands.  Oh wait, it was ONE errand.  And when we got home, I retreated to the bed for an hour before we were on the go again to get Reese and Eric to tae kwon do.  I'm glad I can do these things after Little Chemo.  It's better than Big Chemo, which pretty much grinds everything to a halt.

Anyhoo, I'm definitely looking forward to pretending I don't have cancer for another weekend.  I hope all you readers have a great bunch of days!!!

Tuesday, June 7, 2011

Ramblings on a Chemo Eve

I seem to have two general reactions to the day before Chemo Wednesday.  Either I run around like a crazy person cleaning everything and freaking out, or I totally procrastinate and pretend like chemo doens't exist.  Since I just now plugged in my electronics to charge and am considering making a vague to-do list for the morning...I think I'm in the second option this week.

Admittedly I do tend to freak out more before Big Chemo.  I can't help it.  Knowing that I'll be feeling blah for 4-5 days makes me want to clean and bake things.  This week though, I'd say we're woefully unprepared, so good thing it's Little Chemo.  I don't even have spinich for my smoothie, man.  That's practically a crisis situation.

Eric and I were talking last night, and at one point he asked me what I thought.  I burst into tears and said, "I wish I wasn't sick."  Because I really do wish that, more for my family than for myself. 

But at least I don't have Ebola.

I just finished re-reading The Hot Zone, and really, it's for the best that we don't have Ebola.

I have great big plans for the rest of the week and I hope I can get some stuff done because I spent a lot of time goofing off.  Which I think is mostly okay.

Well, Happy Chemo Eve!  I think this should become a gift giving holiday, hint hint.

Sunday, June 5, 2011

Chemo, why you gotta be like that?

Holy crap.  Chemo is kicking my ass this weekend.  Or else I just did too much yesterday, that could be it too.  I got out of bed yesterday morning, crawled back in about mid-morning, woke up around 11:30am, we were out for a few hours, and I went right back to bed as soon as we got home.  I'm not a huge fan of this, but what can you do?

Fun things that have nothing to do with cancer:  My little girl and my awesome husband tested for their yellow belts at tae kwon do yesterday.  I'm super proud of them.  On Friday, I not only got to kidnap a baby, I got to nap with said baby in my recliner.  It's been AGES since I got to nap with a baby.  I rediscovered the joy of mixing a can of chickpeas with some vegan mayo, tomatoes, and pickles.  My main plans today include gathering ingredients for mushroom risotto and going to a birthday party.

I would say that of all my recent chemo weekends, I felt the least sad about this one.  Chemo gets me down, feeling so sick gets me down.  This weekend has been pretty good though.  I have a lot going for me, which I always knew. 

Friday, June 3, 2011

Grab the first food item you see and shove it in your mouth real fast!

That's kind of how I eat on Big Chemo weeks.  Smelling things makes me ill.  Sometimes thinking about what I should eat makes me ill.  Nothing sounds good.  If I think it might taste good, chances are it won't.  So frustrating for someone who loves to cook (and eat).  Last night and the night before, friends brought meals.  I'm pretty sure the only nutritious thing I ate was those meals.  It makes such a difference in our household.  Thank you, kind friends.

Today the pump comes off.  I'll try not to cause so much trouble at the cancer center like I did last time (eye roll).

Tonight I will eat popsicles.  Life can still be good even if it sucks sometimes.

Thursday, June 2, 2011

Scans and chemos, oh my!

Yeah, that pesky CT scan was yesterday.  So Tuesday night I had to drink the barium.  I got vanilla because that usually seems to be agreeable.  It was disgusting.  My guts hated it and expelled gas and output all night.  Then I had to drink more in the morning.  Blech. 

They make you drink another cup in the hospital too, right before the scan, so when the guy asked me what flavor I wanted, I said, "Oh, anything BUT vanilla."  He ended up bringing a crystal light concoction that if I'd had to drink any more than a little cup, would have been all over the floor.  As it was, I almost yakked it up.  Fruit punch isn't my favorite flavor either, yo.

The good news at the scan was that the guy offered to have my port accessed.  I was hesitant because what if the hospital uses different stuff somehow and it would have to be redone at the cancer center?  So I said, "Okay, as long as you promise me that I won't have it redone later."  I don't know know if he gets that question a lot or never, because he laughed. 

The nurse who accessed my port said I looked familier, because of my tattoos, and we tried to figure it out.  She was assisting in my port placement surgery.  We talked tattoos and vacations.

Scan...I almost started laughing outloud.  The giant donut machine tells you when to hold your breath and when to breathe, so that wasn't different.  But I don't think I've had this one before.  It said, "Breathe in, hold your breath" scan scan scan, then "BREATE!!"  And it was emphatic like that too.  There are also open and closed mouth smiley faces on the side of the machine, but I can't figure out how those are helpful because you can't really see them when you're being scanned.  At least I can't see them because I close my eyes (lasars, man, lasars).

After that, Eric whisked me off to chemo.

Which was long.

There is a nurse at chemo who is intrigued by my green smoothies.  Every time she asks me what's in it.  Yesterday, because of the scan (nothing to eat or drink after midnight) I didn't have a home made smoothie.  She commented on it, so I whipped out the smoothie from the store and let her read what was in that one.  She was impressed that I do the same thing at home just about every day.

I was seated in the middle of the chemo lounge which I think would have bothered me before.  I've had so many chemos now that it really doesn't.  At first I didn't have a chair so a nurse did vitals while I was sitting at a side table!  They were so busy in there.  So many people who are affected by cancer. 

After I got home, I crashed on the chair, begged for ramen noodles (sore throat), and slept.

I just got out of bed and feel like I could go back to sleep again.