Wednesday, August 31, 2011

Chemo was lame today, but I think it's because I'm in Bad Attitude Land right now.  I'm trying to work my way out.

No benedryl today.  What what??  I've had a lot of chemo, and this is the first time I didn't get benedryl.  I guess I was kind of used to that mandatory nap.  Chemo is sooooooo boring and long without it.  And I like that falling asleep feeling.  Do you think if I ask the doc for it, I'll get it back?  Is it weird that I want it? 

The snacks at the chemo center are now hoarded behind the nurses' desk.  Yeah, that's right.  Grown adult cancer patients have to ask someone for a snack.  It's sad.  I mostly bring my own food, but it's nice to have those Lorna Doone cookie things.  Especially when chemo drags on and on into infinity.  I drank their bottled water and their soda though.

Right now I feel mostly okay, just tired.  And cranky.  Sigh.

Tuesday, August 30, 2011

If I don't go to bed tonight...

will I still have to go to chemo tomorrow?

Sigh.  I'm being a baby, I know. 

Prayers and positive thoughts very much appreciated, now and always.

Saturday, August 27, 2011

My Newest Ink

Shhhhhh...don't tell my doctor!!

Friday, August 26, 2011

The LULZ never stop

I called a cancer center in Dallas today to see what needed to be done to transfer there.  The woman I talked to said that I would need to complete my treatment before I could start seeing a doctor there.  I explained that I was just starting a new treatment, but that we were moving and I would need a new cancer center.  She transferred me to a nurse. 

At first, the nurse didn't realize that I'm moving TO Dallas, not just changing cancer centers within Dallas.  Then I was trying to explain to her that I'm starting a new chemo drug regimen, this is the third drug change, blah blah blah.  She asked me what drugs, and I told her.  She said she would talk to the doctor and get back to me.  At that point, I asked if I would be seeing a doctor that specialized in colorectal cancer.

The nurse's reply?

"Oh!!!  I thought you had breast cancer!  Now it all makes sense."

Sigh.  And LOL.  Just because I'm young and female does NOT mean I have breast cancer.  However, that's the assumption I get from lots of people.  I'm positive I told the first woman I talked to that I had colorectal cancer.

At any rate, I think things are straightened out.  Just another adventure on this cancer journey!

Thursday, August 25, 2011

A new day

Aren't you glad we get to start a new day every day?  And that we get a chance to work on things and try to be better people?

Yesterday after my onc appt was rough, I won't lie.  My little guy was testing, testing, testing and by the time Eric walked in the door, I was done.  I cried and cooked dinner.  I drank two very strong amaretto sours (tall glass, whooooo!).  I calmed down and chilled out.  After dinner I ignored the world and did some sewing (and continued drinking).  I browsed through my new VegNews magazine.  I laid down and read with Reese.  Eli and I talked about how tomorrow is a new day and we both can start over.

This morning I woke up and a thought popped into my head.  Life is going to throw stuff at us, big stuff, small stuff.  I can't control that.  What I can control is my attitude and my choices.  One of the people on colonclub who I greatly admire for her strength has a signature that goes something like this:  You can't stop the waves, but you can learn to surf.  Isn't that a great way to put things?  It's so true.  This is an imperfect world full of imperfect circumstances.  I can pitch a fit and booze it up like I did last night, or I can choose to do something different with my time and energy.

I'm not saying that I don't have emotions about what is happening.  There are a shit ton of emotions, I guarantee you.  And that's okay.  I'm allowed to grieve the circumstances I find myself in.  It's perfectly all right for me to be pissed off about this situation.  But what is my choice about my attitude going to be?

I am not going to let this get me down.  I will use my energy to fight to be here for my husband and my children.  I'm going to rock on with life.

I very much appreciate all the kind words and virtual hugs yesterday.  They were needed muchly.

Today is another day!

Wednesday, August 24, 2011

Persistent pulmonary metastases.

From the CT report:  "More visible lesions in right middle lobe extending to pleural surface with a region of linear density extending to pleural surfaces and pericardium in the right middle lobe.  Small lesion in the lingula is slightly larger.  Spiculated mass in the right lower lobe has grown from 14mm to 22mm."

Sad face.

I tried not to cry, I tried to be business like, to get to the bottom of things.  I held it together for maybe five minutes.  The doctor's face did it, pretty much.  He was so obviously disappointed. 

I wanted a break from Big Chemo so badly.

The doc first suggested changing things up completely and having me start FOLFOX and avastin.  I don't want to do FOLFOX unless I absolutely have to.  I hate it.  He thought that maybe we could continue FOLFURI and try Avastin instead of Erbitux.  So the plan at this moment is for the doc to consult with the oncologist from Atlanta and also with an oncologist he knows in Dallas.  My doc will call me sometime on Friday and we'll figure things out.  I have a tentative appointment to start chemo back up next Wednesday.

But hey, guys, my liver is totally fine!

I just don't even know what to think.  I'm sad, of course.  And frustrated.  I knew this whole cancer thing wouldn't be easy.  Right now I'm eating oreos and feeling sorry for myself.

Sometimes I wish I could peek at the end of the story to know why.  What is the point of the struggles I have right now?  Would it be easier if I knew? 

Well, I'm going to find out how long I have to stay out of the pool if I get a tattoo really quick this weekend.  And I'm also contemplating a high raw diet.  And somebody needs to educate the children, I suppose.  :)

I would appreciate positive thoughts and prayers.

Sunday, August 21, 2011

I'm nomming on a salad (curry tempeh, lettuce, some tomato, mango/ginger dressing) and trying to think what to write. 

The place is a flutter with moving activities.  We're trying to make decisions about what to bring, what to throw away, what to donate.

I'm a little nervous.  I mean, firstly I'm excited, but a little nervous.  I'm nervous about finding another doctor.  About making new friends.  About learning how to use the buses and trains.  About finding a store where I can buy my hippie foods.  About finding a new homeschool group.  I keep reminding myself that we've moved before and things tend to turn out the way they are supposed to. 

I wish I could say that cancer was the least of my worries.  It's annoying how cancer gets all wrapped up in everything else.  Maybe I'll feel better after we see the scans on Wednesday.

It will be interesting to see where life takes us next, that's for sure.

Thursday, August 18, 2011

So the whole fam got up at the buttcrack of dawn yesterday to drag me over to the medical center.  My appointment was scheduled for 6:30am, which sounded like the best idea ever when I scheduled it, but it's crummy to have to wake up the kids.  I usually try to think about pitfalls like that, but when the scheduler is on the phone with the coordinator and she says, "How about 6:30am?"  I'm so on the spot.

We arrived to the medical center just a handful of minutes before my appt time, and I ended up waiting around.  The nurse who finally got me was nice, but she didn't know how to access a chemo port.  I had the option of letting her stick me in the arm or waiting around for someone who could deal with the port.  Seconds before she asked me this, she and another nurse had mumbled about the emergency room being crazy and everyone was there.  So I let the nurse stick me in the arm.  She assured me she was good at it, but it still took her two tires to get an IV line in.  Booooooo.  I've had worse pain, of course.

Honestly, I think I like the arm stick for the CT scan better.  It felt so weird last time, the dye going in the port.  It's warm when it spreads throughout your body, and you can feel lit.  Maybe I just wasn't used to that warming sensation going through my port.

The guy in the CT scan room recognized me and said, "You don't have your kids with you today?  This isn't a very good Mother's Morning out, is it?'  Hahahahahahaha.

Then I met up with Eric and the kids.  They had a way better time than I did, eating breakfast at the hospital cafe.  I got dropped off at the cancer center.

Waiting.  I did arrive a bit early though, and it wasn't too long.  I got a nice chair by the blanket warmer and the bathroom (do I sound like a little old woman when I gab about my chair??).  The volunteer swooped down on me, got me a blanket and even remembered that I like two blankets before I fall alseep.  And things were uneventful.

That was my Wednesday!  I'll see my oncologist next week and we'll see what's what.

Thank you so so much for all the positive thoughts and prayers.  This is hard for me, maybe not the hardest thing I've ever done in my life, but I feel like I need everything there is to get through these few chemo days.  Thank you.

Wednesday, August 17, 2011


I woke up to strange voices, kind of sounding like some sort of space mission.  Eric mumbled something about the TV, rolled over, and went back to sleep.  I laughed.  It was, after all, kind of funny.

Then I realized that my ostomy has been FREAKING OUT since I went to bed.  Although it is nice to be sleeping and pooping at the same time, there was also a major filter fail on my pouch.  It happens.  I opted to get up and change it out.  My guts are expressing their anger at the barium (banana flavor!) that I had to drink last night.  Sorry guts, I have another bottle in about an hour and a half, then more at the clinic.  Perhaps I should have agreed to the chest only CT scan that my onc suggested and avoided the barium altogether?  I have a need to see my clean liver, so he's humoring me, I think.  Maybe next time I'll consider it.

The middle of the night ostomy adventures woke my brain up, and I started thinking so many things that now here I am.  I would have to get up in about an hour anyway (my CT is at 6:30am!!) and I get a benedryl nap today, so I think it will be okay.  We shall see.

Play a 4am version of guess that song?

She says baby
It's 3 am I must be lonely
When she says baby
Well I can't help but be scared of it all sometimes
Says the rain's gonna wash away I believe it

Sunday, August 14, 2011

For someone who claims to be adverse, almost moritified, by change, it seems like I move a lot, huh?

That's right, we're off again!  Dallas, TX, here we come! 

It all happened very fast, but also in a very "this makes sense" sort of way.  It's hard to explain.  No one has been sitting around our place plotting ways to get out of Columbus.  I like it here, we have awesome friends here, it's a nice city.  I'm not sure why things happen the way they do.  We weren't "supposed" to move to Columbus either.  At any rate, we are moving and accepting all the challenges that go with it.

Like finding a new cancer center.  It's probably no surprise that I'm not thrilled with my current situation.  I like my doctor.  The majority of the staff kicks ass.  There are things I would like to change.  Things that I think can be better.  I'm hoping I can find what I'm looking for in Dallas.  It's a big place.

I'm excited.  And freaked out.  And curious.  And hopeful. 

Friday, August 12, 2011

Thinking about all the things

But if I'm going to be honest, I'm mostly thinking about my CT scan next week.  It's not keeping me awake at night (thank you very much, sleeping pill!), but the last couple mornings have been early.  There's other stuff going on (good stuff), but yeah.  Stupid scan.

I'm trying not to worry.  The messages I've been surrounding myself with for the past few months are that worrying does not help.  I get it, I really do...putting it into practice is HARD. 

It bugs me that I have so much scanxiety.  The process itself is easy, it doesn't hurt.  What we're likely to see on the scan isn't a big mystery, I just had a scan two months ago.  But you know...what if.  What if something else has popped up?  What if this crappy chemo isn't working?

Luckily, we're going to be so busy for the next few days that I won't have a lot of time to think. 

Monday, August 8, 2011

I totally freaked out this morning after looking at my stoma.  Let me back up a bit though.

Chemo makes my guts slow to a crawl.  I will go from normal to nugget output like whoa.  It usually lasts a couple days after chemo and then things go back to normal output.  This time, it did not go back to normal.  I made it a point to eat foods that are good for "normal."  I drank lots of water.  Usually this does the trick.

Not so this time!  I looked at my stoma this morning and it was all swollen and sad and awful.  I decided I needed a professional to take a look.  After searching all over the place for my ostomy nurse's number, I thought I would just stop by and see if she could help me out.

Things must happen for a reason, because my nurse happened to be in (even though she had planned to take the day off).  She was glad to help me out, and suggested a remedy.  I was so glad she was in the office.

My own remedy, coffee, actually got things moving so I'm no longer freaked out.  And I have a plan for the next time this happens.

Fellow ostomates, I wanted to share this story to let you know that we all have bad days with our ostomies.  Most of the time I actually like mine very much, and I know that's not the case with everyone.  This weekend was pretty terrible though, not something I want to repeat.

Friday, August 5, 2011

I feel like I sort of fall off the face of the Earth on a big chemo week.  Sitting at the computer tires me out, so I don't keep up with facebook or my message boards as much.  It makes me feel a little left out, but I suppose it is what it is.

Disconnect went pretty okay.  Eli pitched a fit as I was leaving, and I was already in a bad mood and tired.  Then a couple cool things happened.

First of all, the nurse who disconnected my pump and I got to talking about school.  She shared with me about her family and how she is one of the first to graduate college.  We talked about our hometowns and small towns vs. bigger cities.  It was just a fun conversation, and I appreciated that she took a few minutes to talk to me.

The other cool thing was a package sent by someone I don't know very well from a message board I hang out on.  She sent me a care package of teas and vegan goodies, and a sweet note.  Don't get me wrong, the stuff was awesome, but the note and knowing that she is thinking about me meant a lot. 

I'm exhausted, so I'm going to retire to my recliner now.  Hope y'all have a great weekend!!!

Thursday, August 4, 2011


That's what I did for a big chunk of yesterday, wait.  Waiting room for at least 30 minutes.  Waiting for the needle lady to get me hooked up.  Waiting to see the doctor.  Waiting at the appointment desk.  Don't get me wrong, it's not that big a deal.  I was clockwatching the whole time though, as my appt time for chemo came and went.  It was insinuated that I might not be able to do my chemo if it got too late when I scheduled it.  I don't like chemo, but I kind of need to do it.

It helped a little when the doc's nurse assured me that the chemo nurse could call her about the delay, that it wasn't my fault.  And she also was looking in to why I waited so long.  I appreciate that.  I can't remember the last time that I waited less than 1.5 hours for the whole seeing the doc thing.

Finally around noon, I got called back to the chemo lounge.  Premeds arrived quickly, and things went smoothly.  And I was outta there at about 4:30.  Not bad at all!  Well, kind of bad, since I spent the entire day at the cancer center.  I can think of about a million things I'd rather be doing.

There was an older couple sitting to the left of my chemo chair.  I think it was the wife's first chemo, because there were several people explaining things to them.  At one point I heard them wondering how to get to the bathroom while attached to the pole.  I had to go anyway, so I unplugged and wheeled past them.  They watched me every time I got up.  They were watching me quite a bit while they were there, too.  It's times like these that I wish I was more talkative and willing to strike up a conversation.  The chemo lab is just not the place where I feel like doing that.  Plus, I was watching Freedom Writers (which is a pretty good movie, if you were wondering).

I forgot my lunch in the car, so that left me reading labels on all the snacks.  Lorna Doone cookies?  Vegan.  As were the peanut butter crackers.  Eric would have popped over, but it's all the way across town and I didn't want to bother him if I could help it.  I think I would have felt better eating my own food though, it was just healthier (lentil stew and something else, I forget now).  I wish they had fruit or veggies at the cancer center.  Maybe most people aren't up to eating that stuff, but there must be something healthier than Lorna Doone cookies.  And no, I don't think Fig Newtons are healthier.  Or the jello and pudding.  I guess I shouldn't rag on the cancer center too much, since my main staples on chemo weekends are ramen noodles and popsicles. 

The only other thing that happened is that my next CT scan is scheduled for August 17th.  I was a little surprised because I thought we were going to wait until Sept, but the doc is antsy to see if the chemo is working well.  At first he was only going to do a chest CT, which would be nice since I wouldn't have to drink the barium.  I was reluctant.  I reminded him that my pelvis did light up, most likely due to radiation, but what I'm secretly worried about is my liver.  So far so good, it's been clean.  However, never did I even think cancer would pop up in my lungs.  The barium isn't that bad, and feel free to remind me of this when I'm bitching and moaning about how gross it is.  Haha.

So I'm keepin' on keepin' on.  We start school around here next week (as long as I have my act together) and homeschool group too.  I also have a few sewing projects in the works.  It will be good to keep busy.

Wednesday, August 3, 2011

Big Whiny Baby

That's what I feel like.  I don't want to do chemo.  Not today, not ever.  It sucks, I don't like being sick, and the cancer center is not fun enough.  I suggested to Eric the other day that perhaps the cancer center should make chemo more like a party because then it would be fun to go.  I don't know what kind of party one would have with all the Benedryl napping people...a quiet one?

Yes, I'm thinking of all the reasons I just need to do it.  Yes, I'm trying to be positive. 


A lot of people tell me that I'm so strong, but I sure don't feel like it. 

Monday, August 1, 2011

Ten Years

Ten years ago on July 28th, Eric and I got married on the shore of Lake Superior in Grand Marais, MN.  I can't imagine spending the last ten years (and some...we didn't have a shotgun wedding, y'all!) with anyone else.  Shortly after I met Eric, I knew I wanted to grow old with him, sitting on a front porch somewhere laughing and making snarky remarks about the world around us.  Drinking whatever tasty adult beverages we fancy at the time, and eating two different dinners (vegan for me, dead animals for him, haha).  Traveling to new places, having adventures.  It's my ultimate dream, both day and night.  Worth fighting for, don't you think?