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.