Today's Appointment

Eric and I made the trip (4 miles?) to UT Southwestern today.  It's a nice place, with valet and a Keurig coffee making in the lobby.  I suppose more importantly the people were all really nice and helpful.

I checked in and we had to talk about finances with a counselor.  No problems there, thank goodness.  After that it was up to the doc's office where we waited forEVER.  It was a long time.  The doc was knowledgeable and all that, explained the drug and the trial, and then left us in the capable hands of a trial coordinator.  She explained the drug and the trial too.

Then she said, "So do you want some time to think about it?'

Time, my friends, is something I don't feel I have.  I thought it was kind of a silly question, knowing that people come to the trial after exhausting other options.  I signed up. 

There was quite a list of potential side effects, with the most common being hand and foot syndrome (a fancy way of saying very dry hands). 

Before I can officially be a part of the trial, I have to pass a few tests.  I got an ECG today to check my heart (passed).  The doc wants to see my latest CT scan.  Today I had labs drawn.  As long as my labs are good, which I'll find out about next Wednesday, it sounds like I can start the trial.

I'm a little nervous about taking chemo pills for 21 days in a row.  I'm worried about how sick I might get or how I'll feel. 

Interesting things about today:

The doc told us that we're lucky to live so close to UT...some people are traveling from places like Houston and El Paso to do this trial. 

There are only 5 hospitals in the US that are running regorafenib trials, and only 3000 people worldwide will be part of this study.

There is a Chihuly glass sculpture in the lobby of the Seay building.  It's orange and beautiful.

I have a lot more fun at the cancer center with Eric than by myself.


Anyway, no more news until Wednesday.  I can't help but notice how things are falling into place though...and I'm so thankful for where we live and for the people we've met.  I'm praying that things continue to work out for us, especially for childcare.

Moving forward

You know, even when I want to curl up and hide somewhere.

I have an appt with UT Southwestern this Friday.  After I got off the phone with the scheduler, I thought to myself that this is probably the fastest I've ever gotten into a cancer center.  Hopefully this means that something positive is going to happen from all this.

So maybe I'll just try not to think about all this junk until Friday? 

The weekend was really nice, anytime I'm supposed to have chemo and don't is really nice.  We bummed around town, visiting a comic book store, stopping for iced coffee, eating at a new restaurant, hanging out with friends at church. 

I have this thing on my phone called Daily Bible (or something like that).  Today this verse popped up:

John 14:27  Peace I leave with you;  my peace I give to you.  Not as the world gives do I give to you.  Let not your hearts be troubled, neither let them be afraid.

I thought it was very relevant to my situation, and probably a lot of situations out there.  Sometimes I freak out in my mind and then I remember.  I don't have to be afraid because no matter what, God wins. 

Hugs, friends and family.  And please pray.

Oh cancer, you're such a jerk

I didn't have chemo today, that's the good news!

Bad news:  I didn't have chemo because it's not working anymore.  Insert sad face here.  The biggest tumor grew about a centimeter (so it's about 6.5 cm now).  The doctor said now we have to get creative.

My options are a trial at Baylor that is set to start in a month.  It works with some sort of hedgehog inhibitor (what WHAT?).  It sounds like I would be a candidate, so my doc is working on that.

My other option is a drug called regorafenib, which is also in trials, but is anticipated to be approved by the FDA this fall.  There's a trial going on at UT Southwestern, and my stuff has been faxed to them.

Whichever option comes down the line first is the one we'll go for.

Way in the back of my rational mind, I knew it was a pretty good possibility that I'd get to this stage of the cancer game at some point.  The hearing of the crummy news never seems to get any easier though.  Maybe it's me being 35, but I feel like, "How could this ever stop me?"  Know what I mean? 

Anyhoo, it is in my nature to look for the positives.  So here they are.

No chemo today means that I won't be sick this weekend.  Rock on!!!

Since the drugs on both trials, they will be free.  That is a HUGE blessing.  Also, UT Southwestern is in network, so things should be taken care of financially.

I have a great husband who tries to make me feel better, and kids who love me.

Those are the big ones. 

So, from here?  I hope to get an appt at UT Southwestern really soon, in the next couple of weeks.  Please pray that I can be brave and strong on this path God has for me.

I thought I was okay

I wrote some stuff and deleted it.  It didn't sound right but I feel like I should post something in the interest of being real.  Too bad I can't pour my thoughts into a pensieve, huh?  I want to embrace peace and an "It's going to be okay" attitude.  I want to trust that God has everything under control.  It's so hard and I'm just human and I feel broken.

But my parents are here and I don't want to spend this time worrying. 

I wish cancer wasn't so lame and crappy.  :(

I had a scan today.

Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I'm caught in the middle of the storms of this life
I won't turn back
I know you are near

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

(Chorus:)
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We'll live to know You here on the earth

(Chorus)

Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You


Christian lyrics - YOU NEVER LET GO LYRICS - MATT REDMAN

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No results until next Thursday when I see my doc.  I'm okay with that, it was my choice to put the scan off until this week.  Everything worked out nicely with childcare, and my mom was able to go to the scan with me. 

Please pray that I can praise God and not worry, that I can trust and not be afraid, whatever the results are on that scan.

I suppose I should tell you about chemo day since I spent so much time dreading it and complaining about it.  Haha.  As usual, it was...just a normal chemo day.

Eric dropped me off at the wee hour of 7:15am (he had to get to a meeting).  I went to the Starbucks, got some coffee, and sat down to write some letters for a little while. 

8:00am found me upstairs in the lab, where a very friendly nurse verified my birthdate and said, "You're just a baby!"  I laughed and thought again that 35 is pretty awesome.

At 8:30am I was stalking the pharmacy while watching nervously for a nurse to call me back to see my doc.  The pharmacy opens at 8:30, and my appt was scheduled for 8:35.  Eep!  My prescription was ready (thank you, God!!), and my doc was running late, so all was well.

9:00ish  Called back to see the doc.  Labs looked good.  I confessed to my sprained ankle, but assured the doc is was a result of walking/talking/watching kids at a strange park, and not my neuropothied feet.  He felt it, declared it "just a ligament" and that was that.  Chemo approved!  Um, yay?

I sat in the waiting room until 10:15 for a 9:15 appt.  That's unfortunately normal at the cancer center.  I got some knitting done, as my needles and yarn are no longer fighting with me. 

Chemo officially started at 10:30, and I got my own room!  Awwww yeah!  I do like that.  It's nice and quiet and I don't feel like anyone is watching me.  I slept through Napoleon Dynamite, watched some of The Dark Knight, and then put in Disc 1 of Daria.  My snacks were awesome.  I had a big iced tea and some coffee.  Everything went well.

I stopped in to visit a friend really quick after chemo was done.  It was great to see her.

Eric picked me up a little before 3:00pm.

I feel like this chemo really kicked my ass.  After I'd been home a little while, I decided to lay down in bed for just a minute.  That turned into a few hours.  I'm better today and considering a grocery store run (hold me!). 

I'm praying for a relaxing day, and enough energy to work on cleaning up the homeschool room.

I didn't sleep very well last night.  I kept waking up thinking about stuff, like what are the kids going to have for lunch on Thursday?  Should I try to make some muffins Wednesday night after we get home?  And just waking up  thinking Chemo.  Chemo.  Chemo. 

Every time I woke up, I tried to pray.  Not for myself necessarily, but just for anyone who came to mind.  It seems to help, or at least works my brain away from the pity party it seems to want to have in the middle of the night.  I've been trying to figure out what is different.  I haven't had any therapist time since mid-July...it's possible that time to talk was doing me more good than I realized.  The last I heard, the new therapist is starting in a couple weeks.  I thought I could be done, but it will be a positive thing for me to go back.

So today I was writing some Bible verses on index cards in preparation for homeschooling (it's a memory system I'm trying this year).  I came upon this verse:

Genesis 50:20  You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.

It stopped me.  In the background of my mind, I wondered about God's plan.  I know deep in my heart that this is all for good.  It sometimes seems like it's too hard for me, and I don't want to do it anymore.  But maybe it's not about me.  Maybe the important thing about all this shit is other people, and how it affects them and their lives.  Taking the focus off myself is actually very freeing, and there's a lesson about loving people and trusting God in there too. 

Will it help me sleep better tonight?  I don't know.  The busy day we had will help more, a great day with friends in a city far away from the cancer center.   

So...can I pray for you?  I'd like to very much.  Big hugs.

I've been feeling weepy this week.  I'm not able to pin it on any one thing.  Maybe I just feel weary.  Last night I told Eric that I didn't feel like cooking dinner.  Then I said I didn't want to go to La Leche League.  He asked me what I do want to do, and I pretty much burst into tears.  After that, he asked if I'm taking all my medication.  Haha.  For the record, I am.  (and I also am amused by the question)

I have the distinct feeling of wanting to run away.  Of course, that doesn't really solve anything.  It's hard to solve a problem when you're unsure of what the problem IS. 

Maybe getting out of town this weekend will help.

Prayers wanted and greatly accepted.