Monday, October 31, 2011

Today is Bean Day

AKA the day I totally freak out and frantically make food.  I cooked some chickpeas in the pressure cooker and made a bunch of lentils.  Lentil burgers tonight, lentil filling for some tamales, chickpea cutlets, and hummus.  I'm also pondering a soup for Friday.

I washed clothes, changed the sheets, cleaned in the kitchen...anxiety about chemo makes me very productive!

I am trying not to worry, I really really am.  I'm trying to prioritize, find balance.  Today hasn't been that much of a balanced day.  We'll see how the afternoon goes.  I either feel like doing all the things or none of the things.  Neither one is an ideal situation.

Thursday, October 27, 2011

What was I expecting?

I don't know, a good scan?  Not for me, not today anyway.

We are not talking HUGE growth, but there is growth.  The metastasis that were there are slightly bigger (for example, the biggest one was 1.5 cm x 1.4 cm and is now 2.2cm x 1.9cm).  My liver (and other organs) are clear. 

I cried. 

The doc wants me to start on FOLFOX and Avastin, but not today.  My white count was too low.  So I start the somewhat new stuff next week.  I've had FOLFOX before, but it's been a long time.  The doctor seems confident, or at least was good at faking it, and said if this cocktail doesn't work, there are other drugs.

I didn't want to do FOLFOX again.  The only glimmer of good is that it's been a long time and the last time was right after surgery.  I'm a lot stronger physically now.  Maybe it will be easier.

Stupid cancer.

In other news, I'm going to be referred to a wound/ostomy nurse because I have a fistula.  I can't remember if I mentioned that here, but it's an rectal/vaginal fistula, the kind that would be dripping poop out of my vag if I didn't have an ostomy.  Yet another reason to thank my ostomy?  Definitely.  The fistula isn't bothering me, it's just there.  We'll see what the wound/ostomy nurse has to say.

So next week we'll try for chemo again.  More good news?  If I stay on schedule with chemo until December, I'll be off both for Thanksgiving and for my parents' visit in December.

After the appointment, Eric took me to buy new running shoes.  It made me feel a little better.

When I get these crappy scan results, all I can think of is Eric and the kids.  And what our future might look like.  That's what really makes me cry. 

I came home and played some Mario with Eli, and then herded the kids into the homeschool room to do a little non-media activities.  Reese and Eli force me to concentrate on them, and then I don't think so much about the state of my lungs.  I'm thinking about a run in my new running shoes in a little bit, and since I have another week off chemo, I have a special sewing project to bust out. 

I'm okay in my head, for the most part.  I'm not done yet.  ;)

Now I'm off to think good thoughts and pray.  I'd love it if you did the same.

Wednesday, October 26, 2011

CT Scan day! And some spiritual ramblings

It went fine.  I only had to drink one bottle of barium, about which my guts are very happy.  Instead of nothing by mouth after midnight, I was given until 5am to drink water.  I chugged a couple glasses at about 3am, by the way.  In the waiting room, I sat all of three minutes before being called back. 

The nurse had a little trouble getting the IV in...but sometimes my veins are finicky.  No big deal. 

A good friend hung out by the cafe with the kids, and we didn't get lost in the parking ramp.  Overall, it was a nice experience. 

I wish this all was a nice experience mentally.  It's not.  Inside myself, I've been a wreck since probably last Friday.  Finally on Sunday Eric asked me if I was worried about the scan.  Can you believe I didn't connect my anxiety to the scan until that moment?  There's probably some anxiety about chemo tomorrow too.  I've been running again regularly, that helps.  I've been praying too, asking for help to be strong and positive. 

I cried all through church last week.  It's very hard for me to believe that God loves me as much as he does when I'm going through something so shitty.  Sometimes (okay, often) I think I must not have enough faith.  My rabbi friend Brian from Columbus told me that all I need is faith the size of a mustard seed.  That's all?  I can do that.  I believe there's a plan, I just don't get to know how it ends.  I struggle with this.  I'm the person who will read the last chapter of the book to find out how it ends (Harry Potter and the Deathly Hallows, I'm talking about you).  I do know that when I go to church, when I go to a Bible study, when I read and pray on my own, I feel more peaceful.  Since I need to feel peaceful so I don't totally freak out, I'll keep doing what I'm doing.

I didn't intend to get all religious on your asses, just wanted to share what's in my head lately.  It's a progress, faith and religion. 

So the plan today is to get ready for chemo tomorrow.  I'm going to throw some veg chili together for the crockpot, take a trip to the post office, try to get out for another run today or tomorrow morning.  School my children (we've been at it for ten weeks so far...awesome!!).  Maybe finish a couple little sewing projects.

Your prayers and positive thoughts are, as always, much appreciated.  After I see the doc tomorrow, I'll report back!

Tuesday, October 18, 2011

My Weekend and Finding Joy

I have a couple pregnant friends, and this weekend I think I could really relate to their experiences with morning sickness.  Blech.  Eric asked me if my nausea was worse than normal, but I think the issue was my month off.  I'm sure the roast I threw in the crockpot in an attempt to care for and feed my family didn't help.  The whole apartment smelled like meat for two days.  Double Blech.  Oh well, you live, you learn, right?

One of the things I struggle with on chemo weekends is sliding down into the dark.  Feeling sorry for myself.  Getting grumpy.  Woe is me.  Two things helped me this past weekend.  Thing #1:  Eric, the kids, and I took a walk on Saturday afternoon.  Fresh air was a plus, but getting outside reminded me that the world is bigger than me.  As we walked by the lake, I was able to get past myself and think about the beauty of the evening, the birds, the water.  It was nice.

Thing #2:  Reese and I walked down the street to a new church on Sunday.  The sermon was about joy.  Finding joy in life even when going through difficult circumstances.  If Paul, locked up in jail, could find joy, I think I can too.  It's not easy, and I hope, reader, that you don't think I'm preaching to you.  Everyone is in a different place.  I did sad, I did angry, and sometimes I still feel those things.  For me, it's time to move on.  I have so many things that I'm thankful for, so many things that bring me joy.  Part of fighting, for me, is finding joy.  I'm tough, I don't have to wallow in the dark when I have a choice to find light. 

I was still dragging on Monday, but this morning I feel much better.  I'm going to try to get out and run today. 

Thank you for all the prayers and thoughts over the past couple weeks.  Change is hard for me, but it was all a lot easier knowing that people were thinking about me.

Have a great week!!!

Saturday, October 15, 2011

Chemo update

Yesterday started out pretty normal for our family.  The kids and I worked on some schooly things (note to self...figure out a way to deter Reese from complaining and Eli from rushing through his work).  Eric popped home around 11ish.  At noon, we headed to the cancer center.

Eric dropped me off.  I think that's one of the saddest parts of my day.  I don't mind chillin' in the infusion room alone, I'm probably very boring with my kindle reading, Daria watching, ice water drinking ways. 

Anyway, I went into the lobby and must have looked like I knew what I was doing because the greeters kept their distance.  Up in the elevator to level 4 to get some labs.  A very energetic, funny guy was my blood drawer.  He first handed me a pee cup, and when I looked at him with what must have been surprise, he started explaining how to use a pee cup.  Had I not been through all I've been through in my life, I might have been mortfied.  I said, "Well, I don't really have to go right now."  "I'll get you some water then!" he replied cheerfully, and brought two cups of water over.  "Cheers!" he was energetic, I mentioned that?  I noticed he didn't have a port kit, and when I asked him, he said I could go downstairs and they would pull my labs, but it would take longer and besides, he's way better at it.

Turns out he was right.  I barely felt anything.  He explained everything he was doing, even telling me tidbits of information like how long it would take to run each test, and he showed me how he makes a blood slide and it's a much easier way to count red cells or white cells or whatever (chemo brain!!).  He assured me everyone was great, but I could request him if I wanted.

After that, I went to drink more water, then hung around a bathroom I thought was occupied.  Finally I knocked and tried the handle.  Empty.  Ugh.  So embarassing.  Would it be hard to leave the door opena  crack, people who are leaving the bathroom??

I turned in my pee cup and went down to the third floor.  I waited.  A long time.  It's a waiting room though, and amusing things are bound to happen, especially as crowded as it was.  People kept walking by with iced tea that obviously came from a cafe (it's on the 2nd floor, and I definitely plan to check that out next time).  One woman was fiddling with her dvd player, and it was on top volume.  She ended up at the desk asking them to help her (an easy fix).  I ate a lot of mints.  I read a lot of kindle.  A man was irate because he claimed he didn't get his entire file back after it was copied.  Two different people talked with him, not counting the receptionist.  More than one family had children, that made me smile.

Finally I got called back.  I asked the nurse about the CT scan, and she said it would be right before my appt in two weeks.  I asked where I'd have to go to get the CT scan, mentally freaking out because it's one more thing.  "The first floor has a CT scan," she said cheerfully.  REALLY??  If it wasn't a cancer center, I'd call it paradise.  Someone will call me about scheduling that scan.

Another very nice nurse got me set up in a chair, gave me a warm blanket, offered me ativan (!!), and got me all set up and infusing nicely.  The chair did indeed massage and warm my butt (and back and legs).  They're a bit lacking in the snacks and drinks department:  there are a few kinds of juice, ice water, goldfish crackers, and cheese sandwich crackers.  Not a problem.  I'll bring my own stuff next time.

Most of the time was uneventful.  I took that ativan (which was just a smaller dose of the sleeping med I already take, no big whoop) and had a nap.  While I was watching Daria and starting to get that antsy feeling chemo gives me, guess who showed up?  Eric and the kids!!  The place was mostly empty, which was probably a good thing.  We don't want to bother anyone, after all.  Reese asked a lot of questions, including how I get to the bathroom.  After a little bit, we crammed together in my chair and Eric took a picture.  Awwwwwww.

Would I want the kids there the whole time, all the time?  Probably not.  It's boring for me, I can only imagine how dull it would be for a couple of kids.  Having them visit though, that was so great.  Listening to Reese ask really great questions, listening to Eli excitedly telling anyone who would listen about the game he was playing, seeing Eric's smile.  It makes a crappy day a whole lot better.

After my chemo adventure, we stopped at Whole Foods with the intention of getting vegan stick butter.  Of course we walked out with a bunch of other stuff, including coconut water which is awesome to drink when you're feeling gross.  I'm drinking some right now.  I was able to put the kids to bed before I crashed into my recliner and watched that movie about facebook.  The Social Network?  I thought it was about a facebook murder mystery, but it was still an okay movie.

I'm so thankful that things went well yesterday.  I'll probably spend the day catching up on Glenn Beck and resting.  Thank you for your prayers and great thoughts.  Much appreciated!

Wednesday, October 12, 2011

Friday, Friday, Gotta Get Down on Friday.  Or get chemo on Friday?  I think I'd rather get down.  Friday is the day. 

Calm thoughts.  Peaceful prayers.  Feel free to send 'em my way.

Tuesday, October 11, 2011

News of Tuesday

Eh, not much to report.  I called the doc's nurse around 1:30pm to ask her about the progress of my chemo appt.  She was able to look into her handy computer and see that things have been approved, and we were just waiting on the head nurse or someone.  I asked if she knew what day, and she asked my preference.  Friday is my preferance.  She said the pump disconnectors don't work on Sunday, so I asked if we could disconnect at home.  Right away she said that is fine with the doc, we just have to return the pump on Monday.  Relief!!!!

I also had a very awesome friend offer child care.

I never did find out when my appt is this week.  I'll call tomorrow morning.

Can you believe this?  It's totally different from the last cancer center, I'm amazed. 

Thanks for all the prayers and thoughts, all.  I can tell it helps me.  I feel much more calm today.  As I shared with some people, I need to get my head wrapped around more chemo and then I will feel better.  It also helped that I was able to bake bread and figure out a grocery list so we'll have meals/food when I'm sick.  I did some cleaning too.

So, one day at a time. 

Monday, October 10, 2011

More Chemo

I knew I'd have to do it eventually...I didn't think it would be this week.  But what can you do? 

I met with the new doc today.  So did Eric.  And the kids.  Isn't that nice?  I thought so.  We got to walk through the chemo lounge, which has heated massage chairs.  What WHAT?  I feel a little cheated because I've never had that before.  It's pretty fancy.

But yes, chemo.  The doc thinks it would be best to do one more chemo cycle (Avastin and FOLFIRI), then check things out with a CT Scan.  It sounds reasonable.  I wouldn't want to just disregard the two cycles I've already had in case they're working, but I also wouldn't want to keep doing what I'm doing for two more months and then see what's what.  The doc wants me in for chemo this week.  That I wasn't expecting.

Even though I knew I'd be doing more chemo, it's still depressing.  I hate the way it makes me feel.  I'm annoyed that my stupid chemo is disrupting Eric's job.  It's all so frustrating.  It's hard to plan for something when we don't know when exactly (I'll find out tomorrow). 

So that's the deal, for now.  When I find out more, you will too.

Friday, October 7, 2011

I'm going to dump

If that's okay with you.  Overall I feel that I'm doing pretty well keeping it together, praying about things that worry me, remembering that I need to ASK for help (that people genuinely want to help and I'm not bothering anyone).

This morning is going smoothly.  Kids are dressed, I'm dressed, the garbage is out, laundry is started (even the sheets, man, even the sheets), I have a plan for the day...I should be thrilled about this.  On the way out to drop off the garbage, a thought popped into my head.  I'm not going to be able to do all this once I start chemo again.  Because it's true.  I already know I can't.  So I'm kind of dreading seeing my new oncologist on Monday because of course, he's going to tell me that I have to start chemo.  What a jerk, huh?  Ugh.

I want so badly to look after my family MYSELF.  It sucks that cancer keeps me from that.

Right now I feel overwhelmed and chemo hasn't even started.  Part of it is the mess that this apartment still is.  Eric will be home for good today, and I know he'll help me get the last things in order.  And help me figure out how/where to store my canned goods.  And we'll get more into a routine and the kids will take over the chores we've slacked on over the summer.  I know it will be fine.  It will be good.

I just feel so GOOD right now.  No appts, no's so awesome.  Thinking about going back to that makes me depressed.

All right, enough of this.  I have children to educate and some things to do before our exciting trip to the airport.

Pray for me.  Please.