This blog has gotten away frem me

Wow, it has indeed.  Let's see if I can catch up.

Last Wednesday I wend in to UT for an MRI, trying to figure out what's going on with my legs.  I had labs done before that and freaked out the nurses with my high blood pressure.  They wanted me to stop up to see a doctor (mine was absent).  The MRI was fine.  While seeing the doctor, he was concerned about my blood pressure but also took a look at the MRI and suggested that I quit regorafineb to concentrate on what the deal was with my brain.  The doc was concerned about lesions up and down my spinal cord.  He offered to get me started with a chemo regimin, but I decided to go back to Baylor.

Friday, I got in to see my doc at Baylor.  I did an MRI and CT scan.  Eric talked to my regular doctor (do I have enough doctors??) on Monday, and he wanted me to see a radiation oncologist.  Hospice was also tossed around, and we'll talk to those folks tomorrow.

The rad onc was awesome, answered all our questions, and suggested that there was no one rignt answer.  We're to think about it and get in tough with him tomorrow.

It's hard becuse I picture myself having all this immortality, but in reality, I so don't.

The rad onc asked me how I was so tough.  I said that I have a tough God.  And I definitely do.  Prayers would be awesome.

This never goes as expected, does it?

Eric and I went to UT yesterday for my labs and for me to get the MRI (hopefully to figure out my pesky leg/back pain).

At my labs, my blood pressure was high.  I don't remember what the numbers were, but it freaked the nurse out.  She started making phone calls, and I ended up with an appt with a doctor who works with my doc.

The MRI was...noisy.  The nurses and techs were all so nice though.  I tried to listen to music, but you can't really hear anything in that tube with all the banging and growling.  After a really long time, it was finally done.

After that, we headed to the doc's office.  I got in right away, believe it or not.  The doc talked about my symptoms, took my blood pressure, and declared that I needed a break from regorafenib and some blood pressure meds.  Then he saw I had an MRI and wanted to check it out.  The doc looked at the scan pics for a few minutes, then decided to see if the techs could give him a quick read.

I was pretty glad to get what would have been about two weeks off the pills.  Eric and I joked around until the doc came back.  He was all serious. 

The MRI showed evidence of lesions (tumors) on my spinal meninges, which I believe are the layers that protect the spinal cord.  The MRI only covered a section of my back, so the doc was not able to say whether the cancer has spread anywhere else, like into my brain.  He suggested a brain MRI to be sure.  If there are tumors in my brain, they can be radiated.

The tumors on my meninges...they best react to Irinotecan.  The doc wanted me on that this week.  Also, I'm out of the trial.

I had a thought in my head that if the trial didn't work, I'd go back to Baylor.  Eric made my wishes known, so the UT doc talked to a doc from Baylor.  After a couple phone calls, I have an appt at Baylor tomorrow morning.

So how bad is this?  It must be pretty bad because even my Baylor doc's nurse sounded sad.  It's so weird because I'm still hobbling around and I don't feel like someone who has cancer right outside my spine.  Processing this is hard, y'all.  I prayed a lot yesterday, prayed for trust and faith. 

I think I need more information, but man, I'm freaked out. 

It's been a few days...

I'm still here! 

I'm trying to eat some noodles, but I'm not sure it's working.  See, 30 min. before I eat, I'm supposed to take an antinausea pill.  This pill makes me dizzy and tired and eating is the last thing I want to do after taking it.  I might have to check into other options.

How is my puking doing?  Eh.  Probably if I took my anti-nausea pills regularly, it would be better.  I'm pretty bad at pills.

More if more occurs.  :)

Really?

My MRI got canceled and rescheduled because, get this, the machines (more than one) are not working.  Um, okay.  The nice man who called offered to reschedule on a Wednesday when I'm already at the cancer center.  So I wait until Oct 24th.

Other news?  Not much.  I'm finding creative ways to use my walker.  I can't tell if I'm getting weaker or not (although Eric asks me often).  As often as I can, I'm up moving around.  This whole thing though is a drag.  I can't get used to not being able to do things around the house.  Yesterday I cried because I couldn't help Eric clean up. 

One thing this walker has taught me is to just trust God.  He's in charge, and while I'm not crazy about this part of His plan, I know it's all for my good.  Can you pray that I can just keep trusting?

I'm doing better, emotionally.  I spent some time alone Wednesday evening while the fam was at church...I prayed a lot, trying to figure out why the walker bothers me so much.  And then it hit me (and no, I didn't fall down).  Pride.  I've always said things like, "The people in the cancer center waiting room look so much more sickly than I do" or have felt sorry for people who can't walk.  I've been proud that I was strong enough to handle chemo infusions.  Giving God the glory?  I'm not so good at that.

I'm not saying that God struck me down to punish me.  I don't think God is like that.  God loves us all so so much.  So why is this happening?  Maybe to help someone else.  Maybe to help me.  God cares more about my character than my comfort, y'all.  Maybe something in my character needed work.

Anyway, I do have a walker which the church generously gave me to use.  It has wheels and brakes and helps you get off the floor if you end up there.  It's helping me to be much more confident in walking around, that's for sure.  And at home I can put it in strategic places where I know I have trouble (bed, I'm looking at you).  It's a blessing.

In other news, I have an MRI scheduled next week, just to make sure there aren't any sneaky tumors causing trouble with my legs. 

Thank you always for your prayers.  It means a LOT.

Cycle #2, Day #1

I stalled on the pills this morning.  The stalling was partly the result of a crummy morning and partly because I don't want to take the pills.

Crummy morning happens when I take a pain pill, drink too much water, and throw up at 6am.  It then continues when I wake up at 8am feeling groggy from the pain pill.  Thank goodness the kids are able to get their own breakfast.

I was showered and dressed by 9am (and exhausted) though.

This not being able to walk right thing is stressing me out.  I'm worried about falling.  I don't trust my left leg at all.  It's frustrating and scary. 

I never expected my life to be like this.

I woke up this morning very sure I was going to ditch Regorafenib.  Since I have the poison pills in my bag, I guess it didn't work out that way.  Here's what did happen.

Eric went to UT along with me this morning.  At the registration desk, I found out that my appointment was at 9:15am, not 8am.  (The research coordinator promised me the same times on Monday, but whatever).  I decided to get my labs done and then go to the doc to see if I could get in to see him a little earlier.

Labs were fine.  As usual.

Up at the doctor's office, he wasn't even in yet, as it's not his usual clinic day.  He wandered in to get coffee a little while later, then told us it's very busy today.  So no early appt. 

While all this is going on, my legs were hurting.  I was tired.  It was not fun.

We got called back by that pain nurse, who talked to me about my leg pain.  She was much less hyper today.

The doctor finally showed up, and wanted to hear all about my neuropathy.  Then he asked me why I thought it was neuropathy.  It was probably about that point when I started crying.  The doc calmly explained that regorafenib doesn't cause neuropathy.  He suggested that the neuropathy in my legs could be from the FOLFOX I'd done previously.

What?  I didn't get it either.  Eric and I were talking a bit later and I remembered that while I was on that break to go to Cambodia, my feet started getting numb and tingly.  The time frame for that incident and my leg pain now is about the same.  So it is possible.

The doc also said it could be a tumor pressing on a nerve, so he wants to have an MRI done.

And?  My cough is just about gone, which the doc took as a good sign that the regorafenib is having a positive effect.

Eric and I couldn't argue with the doc's reasoning, so I'm back on the pills starting Wednesday.

I have mixed feelings about this.  The doc did give me a stronger pain med, and he does want to find the source of the leg neuropathy, but he's also confident that it's not the chemo I'm on now.  I just don't want to feel the way I do.  I don't want to have to grab on to things to steady myself or fall in the UT lobby because Whoops!  My leg just gave out!  I want to help around the house and go for a walk with the kids.  All this is very frustrating for me.  I don't want to be sick.

The doc even noticed that my mood is different (and doubled my prozac).  He's right.  I've been struggling for a couple weeks now.  I trust God and I know He has plans for me to prosper, and that my time isn't His time.  I'm just having a hard time with it all right now.   Please pray for me.

Two for One!

That's right, two days in one blog!  Pretty awesome, huh?

Yesterday I went to UT for labs and blood pressure and to talk to the research coordinator.  My blood pressure was kind of high, as per usual.  I crabbed at the research coordinator a whole bunch.  My legs hurt and I have neuropathy up to my butt.  I'm exhausted all the time.  Walking?  Not good.  She was sympathetic and assured me that I can talk to the doctor about my options, which include things like lowering the dose of pills or taking another week off.  We shall see.

The research coordinator confirmed that Regorafenib has been approved by the FDA, but she said it won't affect me at all.  I'll continue on the trial.

I see the doc on Monday to converse about all this.

Today I went to see the therapist.  Guess what?  She called in sick and unfortunately the scheduler wasn't able to get a hold of me.  It's such a LONG walk from the car to registration, and I pretty much turned right around and went back.  It reminded me of Carlsbad Caverns and the 800 ft walk up and out.  After I got back to the car, I sat for a little bit.  Tired legs, yo.  Very tired.

Well, I'm off to heat Reese up some ravioli and hopefully get some homeschooling done.

Thank you so much for praying for me, everyone.  :)

Cycle #1 Regorafenib Done

Or it's not done until my week off?  I'm going to consider it done because I took my last four pills of this cycle.

This is honestly the hardest chemo I've done, and if you've been following along, I've done pretty much everything.  Aside from being tired almost all the time and having no appetite, my legs are really bothering me.  I can't sit too long, I can't walk around too long...laying in bed feels pretty okay but I can't really lay in bed all day.  It's really frustrating.  I can't sit long enough to knit.  I can't walk enough to take the kids on a walk. 

I talked to Eric about not doing this chemo anymore.  After some conversation, I think I can take this week off and start the second cycle.  My goal is to get to the ct scan so at least we can see if this junk is doing anything positive. 

I didn't know it would be this hard.  Maybe my body has just had enough chemo, I don't know.  I'm feeling really down, and praying that this next week off the pills will give my body enough of a break so I'm feeling better.