I went in for labs today.  My blood pressure was a little high (140ish/80ish), but with this chemo, that's normal.  I got weighed today and since I started this chemo I've apparently lost 12 lbs.  Um, yay?  Yeah, that's a yay. 

Then the nurses told me they wanted a urine sample.  Gah.  I was told last time that I didn't need to do that until I see the doctor.  If they would tell me, I would be prepared.  I offered to suck down my vanilla flavored kuerig coffee, and the nurses laughed.  At least I didn't pee all over myself this time.

And that's about it.  I still feel really tired, and my legs must be tired too. 

My mom and dad sent a package, and in the package was a little rock with this verse on it:  "Trust in the Lord with all your heart, lean not on your own understanding.  Proverbs 3:5"  How relevant to my life is that?  I do struggle with wanting to be the boss of myself rather than yielding to God and letting Him have control of my life.  When I do quit being so stubborn, my days are much smoother and more peaceful.  So today, I will just trust.

Thank you so much for your kind words and prayers.  I feel very blessed to have so many awesome people in my life.

I don't want to be a whiny baby, but I think this chemo is the worst I've done.  The exhaustion is just awful.  Seriously, the ideal situation is me laying down for a nap every few hours.  Guess what?  That totally doesn't happen.  Walking around is terrible.  My legs don't want to go, and sometimes they hurt.  I get restless and uncomfortable sitting down and standing up.  I feel blah all day.  Not nauseous, just blah.  Nothing sounds good.  My mouth is sore, so eating some things is hurty.  Ugh.

I realize that my situation isn't the worst.  I'm able to get through each day.  My husband is amazing, the kids are helpful. 

But.  It hasn't even been two weeks and I feel so done with this.  I need some lifting up, friends, in a big way. 

I will keep plugging away because I have a ton of reasons to do it.  Not giving up at all, just feeling weary.

I'm normal!

That's right, the side effects I complained about are all normal.  Even my weak legs.  I'm not quite sure how to feel about that.  Chemo has always been easy on me, so to have this one kicking me in the butt is hard. 

Anywho, not a lot to tell.  The nurse poked me in the port instead of searching for a vein in my arm.  My port needed to be flushed.  My blood pressure was on the high side, but I guess there are pills for that, and if it continues, the researcher will let the doc know.  I chatted with the research coordinator for a few minutes, and then was done.  I think it took longer to drive there than do the actual appt.  It makes me kind of miss Baylor.

The good news for me is that after the first cycle of the regorafenib, people tend to get used to it and have fewer side effects.  I think I can hang in there for a couple more weeks, especially if people are praying.

Hanging in there!

That's what I tell people, and it's pretty much true. 

The next question is almost always, "How do you feel?  Any side effects?"

Fair questions.  And I don't mind answering.  I feel...tired.  I slept all night last night (waking once), and I still could probably go back to bed and sleep some more.  My feet feel leathery, much like they did on Avastin.  I can't tell if my hands are more dry.  Most of the day, I don't feel hungry and have to convince myself to eat.

I'd like to write more, but I should probably use my energy to educate the children and get some laundry done.  Thank you for all the prayers!!!

Being Real

I'm pretty sure I've talked about this before, being real.  In light of a couple of comments over the last few days, I wanted to bring it up again, and really just examine myself about this topic. 

I will admit that I have a hard time being real sometimes...it's easier to answer a "How are you" with "I'm good" than to go into how I'm really feeling.  Maybe I should be saying something like Dave Ramsey, "More blessed than I deserve."  It's such a hard question, especially if I'm not sure if the asker really wants to know.  Are they just being polite?  I don't tell everyone I come in contact with about my situation, about the pain in my lower back that hasn't gone away, about how sad cancer makes me sometimes.  It brings up a discussion of how real one should be to be considered real.

Balance.  And choices. 

Someone who had just been told about our family said he was surprised, he never would have guessed it because the kids are so happy and we're always smiling on the way into church.  I smile when I go into church because I like being there.  It's a choice for me to see the blessings in my life, and those things make me genuinely happy.  It's not a fake face.  Church services bring out all my emotions, and I don't hide the tears.  After all, I'm there before God, not for anyone else.

My therapist asked about putting on a "brave face," and I thought about that a lot this morning.  In my mind, this is also about balance.  I'm learning when to ask for help if I need it, when to share, when it's safe and okay to cry.  I wouldn't start crying to someone on the street that I didn't know, but does that mean I'm not real? 

So I travel this path, praying and trying to find balance.  What's good for me?  What's good for my family?  Am I being real today?  The last thing I want to do is act like I have it all together when I *so* feel like I don't.  I want to be honest about my joys and my struggles.  I hope this blog reflects that.

Just what I've been thinking about today.

I took my poison pills today.  People keep asking me how I feel on the pills...last night I told someone I feel fine, maybe a bit weepy, but fine.  I look at my hands and wonder if they're dryer than they were before.  I'm trying to notice if my feet hurt.  Really, I'm just cranky that I have to do this in the first place.  Otherwise, life continues.  Homeschooling and grocery lists and Wednesday night church and loving my husband and kids and laundry and dishes.  I'm quite happy and thankful to be a participant, striving to be real like Naomi and have faith like Ruth.

Well, I'm now in possession of regorafenib

AKA:  Poison Pills

After driving past it a few times, I arrived at UT this morning for my 8:45am lab/9:30am doc appt.  It all took SO LONG. 

The lab didn't know if I needed a urine sample.  I hate those things.  Every single time I pee all over my hand. 

While I was waiting for my doc, a nurse I didn't know came in to ask about my pain.  She was in the room for about three minutes, then left.

The doc went over all the dates of my diagnosis/surgery/chemo/etc.  Again.  Lame.  He did, however, approve me for the trial.

After that I met with the research coordinator, and that was one big wait fest.  The longest part of the wait?  A freaking pregnancy test.  And they must have used a real rabbit because it took forever.  Guess what?  I'm NOT freaking pregnant! 

Finally I had a little meeting with the research coordinator and the pharmacist.  The pharmacist told me all the stuff the coordinator told me the last time I was there.  By this time it was something like 1:30pm and what in the world was I STILL doing there?? 

Anyway, I got my pills.  I'm waffling between this being a good thing and a terrible thing.  Yes, yes, I realize what an awesome opportunity this trial is.  On the way home today I cried and cried though because it's just more poison that is probably going to make me feel crappy.  I don't want to take poison pills that will make me feel crappy and have sore hands and feet. 

I took my first dose a little while ago.  Sigh.

This verse popped up in my Daily Bible ap: 

James 1:2-4     Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness.  And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.

 

Please pray that I can find the joy in this trial, and all the trials I come up against.  And now I'm going to spend some time goofing off with my kids.

 

Ugh, Scheduling

Scheduling with a cancer center (ANY cancer center) drives me crazy.  I had an appt with my doc at UT Southwestern scheduled for tomorrow.  Today (less than 24 hours before my appt...) I got a call that I'll have to move that back a week because I can't start the trial until it's been 4 weeks since my last chemo.  4 weeks exactly is on Thursday.  ONE FREAKING DAY. 

So.  I wait a week, and see the doctor next Wednesday.

One of the big lessons I've learned on this cancer journey is that I cannot control all the things.  Most of the time, as it turns out, I cannot control any of the things.  Scheduling has been a complete bummer for me 95% of the time.  I resent how much time appointments take.  I get irritated when apopointments are cancelled without notice, set up without notice, or switched around without notice.  And if I have to go to a cancer center more than once a week?  Forget about it.

Deep breath, calming breath.

In the large scheme of things, it isn't a big deal.  I was able to cancel the sitter for the kids, get childcare set up for next week.  Now I have an extra day to clean my house.  Um, yay?

Another chemo free weekend...that's definitely a plus.

I also don't have to run over to Baylor today to get the CD with my scan pics until Thursday, when I will be there anyway.  The kids would rather go to the pool today, which is what we're going to do right now.

I know in my rational mind that things don't always happen in my time.  Please pray that I could be more accepting of that.