Sunday, April 22, 2012

A promise to myself

In this world, I want to have faith and trust like Ruth, and I want to live real like Naomi.

Chemo weekend is going pretty okay.  I'm tired, feeling kind of blah, but looking forward to bouncing back.  Nap time, yo!

Friday, April 20, 2012

Yet Another Chemo Day

Eric dropped me off at the early hour of 8:30am, and I took a deep breath, getting ready for a long day.

9:00am a visit with my therapist.  It's nice to talk with someone who is completely outside the situation.  I really appreciate her.

10:00am  Labs...not much to report here.  The nurse did an excellent job, and no one made me pee in a cup.

10:15  I signed in to see my doctor.  And then I waited.  And waited.  Did some knitting.  Ripped it out because I messed up.  Finally I got the call.  Not a whole lot at the doctor.  I complained about my feet, which are experiencing the effects of neuropothy (ie they are tingly and's like I'm walking around in someone else's feet).  The doc decided to lower my dose of oxaliplatin.  I asked if this would lessen the effects of the chemo.  The nurse said that the studies show that lowering the dose doesn't affect the way it works, and many doctors are advocating starting at a lowered dose in the first place, but not enough information on that.  The lowered dose should help with my feet, the goal being that I'll be able to stay on FOLFOX longer.

My next complaint was my pesky cough.  After a few questions, the doc determined it was caused by the persistent drainage which is caused by the chemo.  As soon as I get to the pharmacy, I'll be the proud owner of some nasal spray that I'm told tastes really bad.  Okay.

Then I asked about information or forms for an advanced directive.  I don't have any kind of living will, but I do have opinions on how I want my body and health tended to.  It's something that I think will give our little family peace of mind.  I was directed to the social worker, and she walked me through the informational packet Baylor has available.  Is it kind of sad to think about a time when I might need to actually use it?  YES.  But it's the responsible thing to do, and the social worker pointed out that everyone should have an advanced directive, healthy or not, because you never know. 

Honestly, the cough combined with thoughts of an advanced directive freaked me out over the last couple weeks.  It's easy to get all worked up, fears creep in, ugh.  Lots of prayer, lots of encouragement.  I suspect there are still things I need to do, reasons I need to be here, so sorry all, you're stuck with me.  Haha.

After seeing the doctor, I went back to the lobby to sign in for chemo.  Apparently my chemo appt wasn't scheduled until 12:30.  What WHAT?  It was a little after 11:00, so the lady at the desk couldn't even sign me in.  No problem, I went to visit some of my friends to show them pictures of our trip.  We were able to chat for a little while, and that was nice.

Chemo itself was uneventful.  After the ativan, I slept most of the time.  I haven't been sleeping very well, so I probably needed it.  I left with my pump around 4:00pm.  Like I said, it was a long day.

Today I feel...sort of okay.  The cold sensitivity isn't nearly as bad, probably because of the lower dose of oxaliplatin.  I'm tired, but I also slept pretty well last night.  My feet are still annoying, probably something I'll just have to get used to.  Ah well, don't we all have things in our lives that we're unable to change? 

Thank you for your prayers!!!

Wednesday, April 18, 2012

Pity Party Officially Over

I'm feeling better.  It took a lot of prayer, a pep talk from a dear friend, and time.  I still have my moments, of course.  This cancer stuff is hard.  I'm at times taken off guard by how hard it is.  One would think that after three years, I would know, but I'm still struck with moments of, "Holy shit, this is crappy and unfair and it sucks!" 

The thing is though, I have a choice about how I'm going to deal with cancer.  I think the easy choice is the Pity Party road where I moan and wail and complain and hide.  It's much more challenging to get up in the morning and be present with the kids.  It's much more difficult to look past myself and care for others.  That's what I want to do.  I want to live life, not escape it.  I always tell people life is too short for nonsense, I need to take my own words to heart.

I'm not saying that I'll never feel sad or disappointed or angry about my situation.  I maintain that it's perfectly okay to feel how you feel.  And when it's time to move forward, I choose to do that without looking back. 

So yes, feeling better.  Ready to take on chemo tomorrow. 

Wednesday, April 11, 2012


I'm still struggling, emotionally, with my latest scan results.  And probably starting back on chemo after having an awesome month off.  I find myself wound up, restless, weepy, frustrated.  Hopeful though.  Trying to do the day-to-day stuff, but it's a challenge.  I don't know.

Now that the Big Trip is over, what's the next goal?  I have a hard time thinking too far into the future because it's all so unsure to me.  What *do* I want for the next few years?

To continue to homeschool my children and spend time with them.
To visit/meet friends all over the US
To go to the beach, more than once
To take care of Eric

I teared up at that last one, which hurts like a banshee in my eyeballs (it's a chemo thing).

So what do you do when you just don't know?  None of us has infinite time, none of us knows the day when we'll have to say goodbye.  Live in the now, right?  I think I can do that.

Forgive me for sounding kind of depressing.  It's a real drag to be told that your tumors are growing.  I'll shake it off.  I'm finding support in all kinds of places, and I made a promise to myself that I'm going to do more self-care (ie KNIT NIGHT!! haha). 

Anyhoo, that's where my head is today.  Please pray for me. 

Friday, April 6, 2012

I got so wrapped up in the scan news that I completely forgot to talk about Chemo Day.

Let's see.  I arrived at the very early hour of 8am.  Blood work was much better this time, no digging around for my veins. 

Then the waiting.  I actually waited a lot yesterday, and I suspect that was because I got squeezed in.  Oh well, waiting means knitting!  I had enough time to frog my project once before I got it right.

Seeing the doctor was meh, as I wrote yesterday, the scan was not the news I wanted and expected to get.  At this point, I'm working through it, praying about it, trying to have an accepting heart.  The doc's nurse came in to talk to me, and that helped.

Chemo...I got the nurse who did my disconnect right before the trip to Cambodia.  She was super excited to hear about it, so I showed her pictures.  Everything was pretty peaceful in the chemo room.  After the ativan I wasn't great at knitting, so I watched Daria and dozed most of the time. 

I busted out and went to visit some friends, to show off pictures, and get hugs.  Although I didn't want to go back to the cancer center, it's nice to know that I have friends there.

So, that was my chemo.  Very uneventful, for the most part.

Today I was at Starbucks putting sugar in my coffee when a random guy came up to me and asked if I was doing chemo.  A little surprised, I said I was.  He recognized the port, said he had one of his own.  At just about the same time, we asked each other what kind of cancer.  It turns out, he has colon cancer with mets to his liver.  We had a nice conversation about treatments we'd had, and then told each other good luck.  After I left, I was all, "Is it that obvious that I'm on chemo?"  But I guess wearing tubes, a huge pump bag, and a tank top...doesn't hide much!  He said I looked good for all the chemo I've had.

Another woman I talked with said I sounded very positive about everything.  I don't feel very positive right now.  I'm actually kind of pissed off about the scan and sad, and just blah.  Lots of why me, why so long, why now?  But she still thought I was positive.

Who are these people, strangers, who are encouraging me?  I appreciate it.  Maybe we should all be encouraging each other more often.

Thursday, April 5, 2012

Not 100% good news

I know a lot of you are waiting to hear how things went with my scan.  The doc explained that overall, there was about a 20% growth of the existing tumors in my lungs.  Nothing new popped up.  He suspects that my body is reacting positively to the Avastin/FOLFOX.  While I was on vacation, I wasn't getting chemo, so it's possible the tumors had a party in my lungs.  If I go back on the chemo, that might stop the party, so he would like me to do three more cycles and then scan again.  That's the plan.

20% sounded like a really lot to me, but we're talking growth like a 1.7cm tumor now being a 1.8cm tumor.  The doc said I'm at a borderline place where we could either keep using what we're using or switch to something else. 

My feelings are all mixed up about this right now.  And I just got home from chemo, so I'm tired.  So I'll be going to rest now. 

Prayers welcome.

Wednesday, April 4, 2012

Kindness is everywhere

Even at the lame-o cancer center, y'all!

The tech who stuck my arm for the contrast IV was freaking AWESOME.  Seriously.  I didn't even feel the needle stick.  When I mentioned it to her, she seemed surprised and thanked me for saying so.

People in the waiting room were wishing each other good luck and offering prayers for each other.

I told myself that I wasn't going to stop at Starbucks today.  Then I ended up there anyway because the coffee cups in the radiology waiting room don't have lids.  *eyeroll*  I know.  I look for any excuse.  The woman who works at the Starbucks wouldn't let me pay for my coffee today. 

I cried a little on the way home.  It's so easy to forget the little things on this journey.  It's so easy to get stuck in how crappy things are.  Today I prayed that I would remember to look for kindness, and remember to pay it forward whenever I can.

Tuesday, April 3, 2012

Another ct scan

Yeah, another one.  Tomorrow mid-morning.  Meh.  I'm kind of over the whole scan thing, the barium thing, the way the techs are not that great with the arm sticking thing.  And the gown.  The gown gives me flashbacks to radiation.  Anyway, I'm trying not to be a baby about it.  And trying not to worry about it.  Worry doesn't help anything, does it?  It's hard though.

Then on Thursday I have my first chemo since we went on vacation.  Double meh. 

You gotta do what you gotta do.


Please pray for me.