Ramblings

I don't know where to start, so I'm just going to take a leap.

I'm feeling really down today.  It started last night, and so far, I haven't been having much luck shaking it.  I would say a good deal of the time now I feel pretty okay.  I feel good and confident about my treatment, my doctor, how things are going.  I'm working hard to live in the now and enjoy everything that I have. 

But right out of nowhere it will hit me:  I have cancer. 

And the thoughts rush in.  I do worry about my future, about the future of my husband and children.  I worry about the times when I am sick and can't take care of them the way I'm used to doing.  I worry about the way our lives have been turned upside down.

Right now I'm not really worried about any one thing in particular, I just have a down feeling.  A feeling that I want to lay in bed all day.  It's annoying because I don't have a reason to feel like this right now.  We have an awesome weekend planned, I should be happy.

But dammit, I'm not. 

So while I was getting ready today, I tried to think about how I can shake this, how I can pull myself out of this.  I tried to evaluate my stress over the past couple of weeks, trying to figure out if there is something missing or something I'm not doing.  I will admit that my own self care goes by the wayside in place of caring for my family and others.  Lots of moms experience this, it's pretty common to ignore what we need to care for the needs of others.  It's probably the most common question I get as a La Leche League leader, how to balance life.

The last time I was feeling kind of blah, I found that random acts of kindness helped.  Making other people happy makes ME happy.  It makes me feel normal.  It lets me give back.  It's like good karma.  It reminds me that one person can make a difference, even if it's small.  I'm not going to tell what I did last time exactly, but it was fun and I enjoyed it.  And I'm not going to tell what I'm thinking about doing this time either.  I just wanted to share what helps me feel better and what helps me get myself back into balance.

Sometimes I hesitate with how much honesty I share here.  I'm torn between not wanting loved ones to worry and feeling that I owe it to others who are fighting like me to admit that I absolutely DO have bad days.  It's certainly not all sunshine and roses.  I do cry and I do get angry and I do feel sad.  But on the flip side, I'm so thankful and so happy and so in love and so at peace.  There is a place for all those feelings.  It's okay to experience them all, to let yourself experience them all. 

So to recap:  Feel your feelings.  Do something random and kind for someone else.  Strive for balance but be gentle with yourself. 

And suddenly the sun is shining and I have shit to do, so check ya later!  ;)

Another Erbitux Down!

Super uneventful chemo today.  I was glad.

I arrived at the cancer center at about 8:30am with my gigantor bag and my smoothie.  After I got called back, I started getting myself ready.  I have to take tylonel as one of my premeds, so I snuck over to the ice machine (the bottled water was warm!  sad face).  Warm blankets were gathered.  I scrolled through my ipod to find some benedryl nap music. 

About three hours later, the nurse was disconnecting me and commented on how nice it was to help someone who knew what was going on.  She mentioned that I had my water all ready and I wore an easy access shirt.  She said I was such a nice patient.

Hahahahahahahahaha.  She obviously wasn't around for my first couple treatments.  I suppose though, once things are squared away, I am a pretty easygoing patient.  Tell me when I'm getting the benedryl, use a bandage that doesn't have that white stuff on it, and I'm good to go.

I overheard another woman talking about leucovorin, which is commonly used for colorectal cancer chemo.  I thought about popping over to talk to her, but then the benedryl kicked in and I was worried that maybe she didn't want to talk.  Sometimes I don't.  I guess all I or anyone else would have to say is a polite, "I don't feel like talking" and that should take care of it.  I'm probably making too big a deal out of it.  It is kind of impolite to eavesdrop, although with the chairs so close together, it's hard not to. 

After Eric and I gathered up the kids and got home, I got Reese started on some schooly stuff.  We worked for about two and a half hours before I had to collapse on the couch.  After Eric came home for the day, I snuck into the bedroom to sleep for a while.  I felt much when I woke up.  Sometimes I just can't deny the need for sleep.

What else?  I'm having issues with the skin around my stoma.  :(  I think the Erbitux is hard on it, and I'm having a hard time getting a wafer to stick.  We're trying a few things, but it might require a trip to the ostomy nurse. 

So yeah, not much else.  Prayers and positive thoughs always appreciated.  It might not mean a lot, but it always makes me smile when I know someone is thinking about me and my family.

Thankful

I am really thankful for today.

My kids are driving me nuts, but at least I'm here for them to be able to do that.
I kneaded bread this morning, and I'm sure that two days ago, that wouldn't have been possible because of how tired I can get.
My smoothie tastes good, and is ICE COLD and doesn't hurt my mouth (anyone who has done FOLFOX will understand why this makes me so happy).
There are baskets of clothes everywhere, but we're lucky to have so much.
My husband is out working hard, and we're so glad he has a job.

I'm glad for this day, and for every day.  Sometimes in the dredges of my sick weekend, I forget about how much I have going for me.  I feel so sorry for myself, and I wish for better for my family.  But man, I HAVE so much. 

Not that I won't complain about being sick the next time.  I think that's too much to ask of me right now.  It's nice to think about the good in the world too when I'm able.

Trying to be Zen

But it's hard.  The sick weekend is so frustrating.  There are so many things I want to DO, and surprise, surprise, none of them include falling asleep in my recliner.  I know I have to rest, that my body is asking for rest.  I get it, I really really do.  I just don't like it much.

This too shall pass, right?  I already feel better today, so maybe I can get to some of the things on my massive to do list.

Maybe that's the problem.  Maybe I need to adjust my expectations and give myself a break.  Maybe it needs to be about priorities right now.  What do I really want to do?  What's really important?  What will I be glad I did, and what can I let go?  What makes me happy, and what just stresses me out?  I think I've always had a difficult time with balance, with mixing up wants and needs.  It will be good for me to think about this more.

Anyhoo, it's been a pretty typical post-chemo weekend.  The neulasta shot makes my head and bones ache, but tylonel helps.  I ate stuff yesterday, mostly noodles.  I slept a lot.  Today I hope to get out for a walk/run (heavy on the walking perhaps?). 

Disconnect Day, a Haiku

Creepy crawly limbs
A yucky taste in my mouth
Afternoon, come soon

Um, excuse me

Said in the gentlest way possible...

I do not have lung cancer.

That's right, I said it.  Yeah, it's confusing.  But in my case, cancer in my lungs does not equal lung cancer.  Someone with lung cancer is going through a whole different treatment than I am.  No worries, I'm not offended at all.  This whole cancer thing is so confusing, it really is.

From what I understand, the cancer cells in my lungs are from my rectal cancer.  That is, rectal cancer is my primary diagnosis, and now I have metastisis in my lungs.  It's still rectal cancer junk.  I take drugs aimed at controlling wild type rectal cancer cells.

I've had a lot of people ask and misunderstand.  I don't know why I feel I need to differentiate between lung cancer and lung mets from rectal cancer, but I do.  And really, please NO ONE feel bad.  I had no clue that there were so many types of cancers and types of treatments that are so specialized.  I mean, why would I be an expert on that?  Why would anyone unless they're in the thick of things? 

So that's the deal.  Rectal cancer mets in my lungs.  Not lung cancer.  This cancer lesson was brought to you by Edy's Strawberry popsicles, Oriental Ramen (thank you, Tanja!!!!) and that delicious hummus from the store (Jarnetha, you rock!!!).

Really.  Not mad or offended or whatnot.  I promise.  Questions always welcome.  As always, feel free to pass this blog around to anyone you think it might be of help to.  Hugs.

An Uneventful Chemo Day

Really it was.  No surprises.  My mom went with me.  She drank a lot of coffee to stay warm in the cold chemo lounge.  Several people asked about her accent, and asked her to say, "Wisconsin." 

I feel...heavy.  And tired.  It's frustrating because there are things I want to do.  Like take a walk with my mom and my kids.  Like work on the bag I'm sewing.  Like plan something cool for a fun, nationwide project that was suggested on a tv show I enjoy.  Like clean up my kitchen so someone else doesn't have to do it. 

Stupid chemo.  You better be working.  Or else.

All right.  I'll be in my recliner eating strawberry fruit popsicles if anyone needs me.

Another Monday

And this is about the time of the week that I start feeling anxious.  Impending chemo.  I woke up thinking about it.  I'm not sure how to stop the way I feel.  Maybe I just need more time. 

Chemo will be fine.  My blood counts were good last week.  I'm going to run tomorrow.  I'm feeling good.

Then why am I so stressed out?  Sigh.  Sigh.

You know what makes me feel better?  Baby ducks.

There, I feel better.

Good things?  My parents are visiting!!!  It's been so much fun.  We took them to Callaway Gardens and to Flat Rock Park.  Friday night was the Mellow Mushroom for dinner, and last night was sushi and Asian food.  Today we're taking Mom to homeschool group.  It's just the best, having them here.

It's a relief to just write that chemo freaks me out.  I appreciate those who are reading and sending positive energy and prayers my way.

Chemo Brain, I haz it

I just had to look up how to spell the word "surprise."  I typed it like three different ways and none of them looked right.  How much does that suck?  My typing is worse than it used to be too.  I forget words sometimes, and it seems that things I should remember, I can't.  Boo.

Sometimes I feel bad about my forgetfulness and my flakiness because it doesn't always affect just me. 

What can I do other than to assure people that I'm doing the best I can?  And make a lot of lists?  :)

Guess what I did?

I ditched on chemo.  Well, not totally.  Let me go back to the beginning.

So I went to the chemo center today.  I had an appt to see my doc, and then was supposed to do Big Chemo.  After waiting and waiting, I got called back to do vitals and the blood draw.  And by waiting, I mean 45 minutes of waiting.  Then I waited some more in an exam room.

A doctor I didn't know came in after the nurse (no I did NOT fall since I've been here).  She explained that she was training and wanted to talk to me about my cancer, if that was all right with me.  Yeah, sure.  I told her the story of my diagnosis, blah blah blah.  She asked about my diet and exercise (both really impressed her, by the way).  I mentioned that my kids really keep me going. 

Then she committed Ultimate Sin #1:  she asked about my kids.

I started crying.  The more I learn and understand about this whole cancer business, the more I worry about not being here for them at some point.  How shitty is that to think about?  It sucks.  The doctor asked if I had family support and I said, "Of course I do."  Then she asked, "Then why are you crying?"

Uh.  BECAUSE I HAVE FREAKING CANCER IN MY LUNGS AND HELLO!  YOU NEED THOSE TO BREATHE!!!!

I didn't say that.  Instead I said, "Well, cancer in your lungs is pretty serious."

Then she suggested that I talk to someone.  I think she meant a professional.  This has been recommended to me before, and I don't know.  I feel like I'm doing okay, and isn't it okay for me to cry a little when someone asks me about the kids (especially someone who doesn't know me??).  I'd be worried about myself if I didn't show any emotion.  But I do want to lower my prozac dose, so maybe I should add in some chatty chat therapy.  I just don't know if I want someone who isn't in my situation telling me how I should or shouldn't deal with it all.

I guess I could vow to be more honest in this blog.

Yeah, that's right.  I don't tell you all everything.  Are you surprised?  Most of the time I don't want to think about all this, and I don't want anyone else to stress about it either.  I mean, I'm pretty open here. 

Anyway, my doc came in at that point and looked instantly worried.  I told him that the other doctor asked about my kids, and he nodded knowingly.  He gets it, I think.  Then I demanded my CBC results and guess what?  My white count is better!  Neutraphils are better.  The shot appears to have worked.  I was sooooooo relieved.

Then we talked about chemo.  Since my parents are going to be here this weekend, I decided a couple of weeks ago that I didn't want to be sick all weekend.  I know I need the chemo, but dammit, I haven't seen my parents in a long time (skype not included).  I suggested that I would do just Erbitux, but not full chemo.  The doc agreed right away.

Now I don't know how much following a particular schedule matters with the kind of chemo I'm getting.  Does pushing it off a week here and a week there matter much if we eventually do it all?  I was so glad the doc agreed to push Big Chemo off that I forgot to ask.  I'll try to remember next time.  I also wanted to ask about my next CT scan

Little Chemo was uneventful.  The chemo lounge was cram packed, and the nurse was in a hurry to get me out of there.  I don't blame her.  The nurses were all running around like crazy.  I slept for a good chunk of the time, thank you, Benedryl.

I don't want anyone to think that they can't ask me how I am, or ask how the kids are.  It's not that.  Honest.  Those of you who have been with me for awhile, you know me.  You know our family.  Chances are, I consider YOU family.  I don't mind answering questions about anything.  For real.  It's hard for me to talk about my worries about Eric and the kids, but I maybe should.  I love them so much.  I'm going to do my best to kick ass at this cancer stuff.  I feel like I owe it to them.  I must do it.

So that is that.  Next week, back on the Big Chemo wagon. 

La La La

I spent the last bunch of days pretending I don't have cancer.  It's pretty easy when you have Little Chemo and feel mostly normal the next day.  After the kids and I ran errands yesterday morning, we spent a mostly lazy day watching Police Women of Broward County.  I took a nap too.  And a bath.  Today has already been great because I went for a run (64 degrees this morning, y'all!), I get to go to Joann's and I have a sewing project in mind.  Later the kids have a birthday party.

I feel really good today.  I feel good about life.  I feel good about everything.  We all know from reading this blog that I don't always feel like this.  Some days are really awful, and I have a lot of thoughts and worries I wish I didn't have.  I always joke that aside from the cancer, I'm great.  And it's true.  I love my life with my kick ass husband and my amzing kids, all my friends and family.  I am so fucking lucky to have this life.  Maybe I'll try harder to remember that on the bad days.

Although I think bad days are okay too.  I would be a big faker if I didn't share the bad days.

So, this week.  I see my oncologist on Wednesday, bright and early.  And we'll go from there.

And now back to my lala land of sunshine and lollipops (vegan, of course!).

Little Chemo

Little Chemo is easier than Big Chemo, for sure.  It was all very uneventful actually.  I arrived at the cancer center right at 9am, got infused, and was done by about noon.

I slept for most of the afternoon though.  I don't know if it's still the benedryl or if the chemo just makes me tired or what.  The kids played and I dozed, waking to quell fights.  It seemed to work out well for us all. 

I was running the other day.  Sometimes when I run, I don't think about anything.  Other times, I think about everything.  My last run was full of thoughts.  My thoughts usually start out cranky and complaining, but move to glad and grateful.  I have so so much to be thankful for.  Aside from the cancer, life is pretty great.  Yesterday was a cool, sunny day.  I got to spend it with my kids.  I get to hug my kids every day, and I get to hug Eric too.  We have opportunities to travel.  There is plenty of food in our pantry, and we're warm and dry at night.  We have a car that runs and Eric has a job.  My kids are healthy.  I'm thankful for every day I wake up and every night when I go to sleep.  Life is amazing, and I plan to fight to be around for a long time.

Oh Tuesday

So after a weekend pity party, I'm feeling much better today.  I wish it was easier for me to deal with the Big Chemo weekend.  It's so hard for me to be too tired to make a meal or wash a load of clothes.  Maybe it's something I won't ever get used to.  I'm trying to stay positive, I really am.  But it's a challenge.

In case anyone was wondering, the Neulasta shot gave me what felt a lot like a stress headache, almost a migrane, for about two days.  Sometimes I felt pain in my joints.  Nothing this tough-y can't handle though.  I hope it's working and I have a whole bunch of infection fighting cells now.

On the Erbitux front, I have dry patches on my face.  Annoying.  I'm using the cream the doc game me.  It's not too bad.

Other side effects?  We're starting to find strands of red hair here and there.  Sad face.

Really though, I can't believe how much better I feel today.  It's like someone flipped a switch.  And I'm glad.  Today we'll play catch up with just about everything, from schooling to cleaning to exercise.  Tuesdays are my favorite day and least favorite day...thankful I feel so much better, but dreading Little Chemo tomorrow.  I better get going...I still haven't figured out how to get the house to clean itself.  ;)

SO TIRED and other complaints

Seriously.  Gah.  I don't understand how it's possible to be as tired as I am.  This morning we all went out to run some errands, and by the time we got home, I was ready to collapse.  And I did, right into my recliner.  Where I passed out.  And I've spent most of the day there.  It's lame, man, lame.  I understand that my body needs to rest so it can heal.  I don't have to like it.

Another lame-o thing about Big Chemo?  No appetite.  Zero.  Nothing in the kitchen sounds good.  Things don't taste right.  I almost need people to put food in front of me so I can eat it without thinking too much.

More complaints...that shot is the lamest thing of all.  It gives me a headache, and at random times, my bones and joints ache.  Sad face.

I didn't run today.  I think that after dinner, when it gets a little cooler and not so sunny, I'll take a walk.  I bet the kids would go with me.

Stupid chemo. 

The Pump is Off!!!

Well, it was technically off yesterday. 

So the entire fam made the trip to the clinic.  It was a nice day, so Eric and the kids were going to hang around outside while I went in to get disconnected.  Overall, it was uneventful.

The cancer center seems to do a lot of training of new nurses, which is cool, so I got two nurses for my disconnection.  There was only a little 5FU left in the pump, so they turned it on high to empty it (into my body, waaaaaahhhhh).  Lame.  Flush with two salines and a heperin, and goodbye needle!  Then one of the nurses said, "Okay, you're all set!"

"I think I need a shot," I said.

She flips through my chart, then finds the notes about the shot, neulasta, which is "prescribed to reduce the risk of infection in patients with some tumors receiving strong chemotherapy the decreases the number of infection-fighting white blood cells."  The nurse bustled off to the pharmacy and then appeared with a shot for my arm.  I was told it would sting and I was all freaked out, but then I saw Eli's tattoo, my newest tattoo, and remembered that it hurt too, and that one shot probably wouldn't hurt as much.  It didn't. 

The most common side effects of the shot are achy muscles and bones.  I don't know when that is supposed to happen.  Mostly it all just made me cranky and tired.

I walked out into the lobby of the cancer center and found Eric and the kids sitting on a bench (yes, they were allowed inside!!) reading books.  Awwwww. 

Now I'm waiting to feel normal.  You know, whatever that means.

Errrr...er

The sound of my 5FU pump.  Errr...er.  I don't notice it so much during the day, but at night?  Or when the house is quiet and I'm alone...it's kind of loud and annoying to me.  But I think it's fair to say that 5FU is annoying to me.  And maybe even loud in my body. 

I'm tired but I can't sleep.  I suspect it's the trip to the clinic today to get disconnected and get the shot.  Maybe I'll try some yoga today.

How did yesterday go?  It was okay.  The more I get up and do stuff, the better I felt.  But I was wiped out by the end of the day.  And the kitchen was a disaster because I only had energy to make food, not to clean up.  It's not like the dishes are going anywhere.  I feel like I did important things yesterday, like working on school stuff with the kids and cuddling in the chair (they have to take turns now, they're so big). 

Thoughts and prayers for an explosion of white blood cells and my body doing what it's supposed to be doing are appreciated.