Tuesday, November 13, 2012

A Celebration



Sheri Jahner's Celebration of Life will be Saturday March 16th, 2013 at Lakeside Baptist Church | 9150 Garland Rd, Dallas, TX 75218 followed by lunch.

I am only in the initial stages of gathering pictures and videos, and I would be willing to include any and all pictures you have that you feel would add to the memory of Sheri.

You can see my progress so far here:

Sheri's Celebration of Life

All are welcome to attend the celebration since Sheri loved each and every one of you.

Please consider this a personal invite.

Eric

Monday, November 5, 2012

A Passing


Sheri Lorraine Jahner, age 35, passed away the foggy morning of November 5th, 2012 at her home in Dallas, Texas after a hard fought battle with cancer.  She was the loving daughter of Larry and Julie (Alwin) Wesson, and was born in Caribou, Maine.  Sheri attended college at UW-River Falls where she received a degree in teaching and continued on to teach and make friends at a charter school in Saint Paul, Minnesota.  Sheri met the love of her life, Eric Jahner, in 1999 while working part-time to pay for college at Arby’s in Hudson, Wisconsin, and they were married in 2001 in Grand Marais, Minnesota on the shores of Lake Superior. 

Her greatest passion was her children whom she began sewing for when they were still in diapers.  Over the years she graduated to making shirts and dresses while she gave Reese and Eli a home school education.  She longed to explore the globe and, after extensive research of the Khmer people, accomplished her dream travel destination of Cambodia in March of 2012.   

Sheri began her blog, I’m Sorry for Cursing, as a young female with rectal cancer with the intent that it assist others and detailed her journey battling the disease.  Sheri is survived by her husband Eric; her children Reese and Eli; her parents Larry and Julie; her sister Amanda; her father and mother in-law Mike and Pat; her sisters-in-law Terri, Sarah and Katie.  She is further survived by countless friends and other relatives that have helped her physically, emotionally and spiritually through her battle with cancer. 

Sheri has requested her ashes be scattered in the Dry Tortugas National Park outside of Key West, Florida.  A celebration of life is will be scheduled for March, 2013 in Dallas, Texas.

Sunday, November 4, 2012

Filling in . . . (cont)

Yeah, Eric filling in for Sheri again. 

Sheri is resting better these days with a much quieter stomach.  Perhaps due to some of the new drugs, she is very groggy and not much of a conversationalist.  Every now and again she gets out one of her witty lines or laughs at something someone says. 

Hospice has been working with me on her pain level this morning since last night was not good (for either of us) so she is sleeping much better today than last night. 

Currently peacful and pain free, Sheri sleeps away the day.

Wishing everyone a great day.

Eric

Friday, November 2, 2012

Filling in . . .

This is Eric, Sheri's husband.  I thought I would post for Sheri until she gets back to doing these herself.

Sheri has seen such a drastic decline in health over the last few weeks, I am surprised.  Gone from walking normally and not looking the part of a cancer patient, to needing a walker to not being able to move her legs at all as of today.  Sheri asks me to straighten her legs in bed, or pull them up if she is in pain.  I lift her to the wheel chair to get her to the bathroom or lift her into the car if we have to drive anywhere.

The most recent scan reports show widespread tumors: from her hip to her hylar structures; from her spine to her cerebellum.  The number of metastasis just exploded.  The Regorafenib actually showed mixed results in her lungs with some tumors shrinking a bit, but others growing substantially.  With the cancer having spread so much, there is no point in even considering the continuation of Regorafenib even though we have the option now that it is an approved drug for metastatic colon cancer.

So Sheri is now in Hospice. 

The nurse is great and the doctor was in today to revew meds and make some changes.  The doc is concerned about Sheri not being able to keep anything down so a few new drugs will be changed out today and if this is not under control by Monday, we have another couple of changes to make that may help.  The problem stems from the tumors in her brain that are aggravating the "puke" toggle switch.  No nausea ever, just "get the bucket" when the toggle gets flipped. 

Sheri would appreciate any prayers you can for Reese and Eli. 

She is struggling these days.

Eric 

Tuesday, October 30, 2012

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.

Thursday, October 25, 2012

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. 

Sunday, October 21, 2012

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.  :)

Tuesday, October 16, 2012

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?

Friday, October 12, 2012

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.

Wednesday, October 10, 2012

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.

Monday, October 8, 2012

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.

Thursday, October 4, 2012

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.  :)

Tuesday, October 2, 2012

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.

Wednesday, September 26, 2012

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.

Monday, September 24, 2012

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.

Wednesday, September 19, 2012

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.

Monday, September 17, 2012

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!!!

Thursday, September 13, 2012

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.

Wednesday, September 12, 2012

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.
 

Tuesday, September 4, 2012

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.

Friday, August 31, 2012

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.

Monday, August 27, 2012

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.

Thursday, August 23, 2012

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.

Monday, August 20, 2012

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.  :(

Thursday, August 16, 2012

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

----
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.

Friday, August 10, 2012

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.

Tuesday, August 7, 2012

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.

Friday, August 3, 2012

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.

Friday, July 27, 2012

Chemo Thursday...#18 if you're counting.  Which I'm not, really, but people keep telling me.

It started out great.  I had Eric drop me off a little early so I could stop by and see some friends.  We chatted for a little bit and that was really nice.  Labs went smoothly.  I got in to see the doc right away, and no problems there.

Then I went to sign in for chemo.  After I sat down and started getting settled for what I expected to be a normal wait, the registration lady called me back.  She informed me that I didn't have a chemo appt, that whoever does appts scheduled me for two lab appts.  The registration lady seemed put out at this snag.  I don't really think it was my fault, although I do get a packet of papers in the mail that detail my appointments.  After looking at that just now, whoops, I was scheduled for two labs.  In the grand scheme of things, is this really a big deal?

"Well, you're going to have a long wait today," registration lady said.
"That's okay, I don't have any other plans," I shrugged.

So I had enough time to start and frog a knitting project twice, write some letters, drink some iced tea, and read.  I wouldn't want to wait that long every time, but eh.

I'll check my vast amounts of paperwork better in the future too.  *eyeroll*

Chemo itself was uneventful.  Eric showed up around 4 pm to hang out with me.  I was done around 5pm.

Today I feel tired even though I just got out of bed.  I don't like to wish time away because who knows what blessings I'll miss, but I wish Saturday disconnect time would come quickly.

I missed chatting with my therapist, but that's a whole 'nother post, I suppose.

Monday, July 23, 2012

No Regrets, Man

I was asked a question after my guilt post yesterday and didn't feel like I could answer it in the comments.  So I'll answer here.

Are you glad you have opted for the treatments?

YES.  It's been three years since I was diagnosed (well, almost) and I feel like I'm still going strong.  In those three years, our family has moved twice, taken awesome trips to places like Key West and freaking Cambodia.  I've made great friends.  I've been homeschooling my children and enjoying my husband.  None of us know how much time we have on this Earth and I feel I've been making the best of it and living life.

I feel strongly that cancer, as crappy as it is, has opened up doors for our family too.  I don't think we would have made a move (let alone two!!) if we were all healthy.  I think we would have pushed off and pushed off our trip to Cambodia, waiting for the time to be "right."  I'm not sure we would be going to church, leaning on God to help us through.  I would have missed out on meeting some of the most amazing people.

Is chemo fun?  Uh, NO.  But I don't regret doing it.

Does it allow you quality time with your family that you would have otherwise not been around for?

I think so.  I went out for a walk/run this morning.  It was the first time I've been out in a long time, and I only ran for a few minutes out of the total time, but I'd consider it quality time.  Last night before the kids went to bed, I read them a few chapters from Charlie and the Chocolate Factory.  On Saturday our family went to a birthday party together, then out for sushi.  Sunday morning we went to church.  In March, we went to Cambodia.  Our little family is so blessed.  I have a lot of quality time.

I go for chemo every other week.  I spend maybe four days feeling yucky.  I don't like it much, but I do it for the time it does give me.  We saw what the cancer does when I'm off chemo after my month-long break in March.  The chemo slows it down, and I'm thankful for that.

And...the wound.

First of all, it doesn't hurt.  It's just there, a hole in what should be a Barbie butt.  Once a day Eric the Awesome takes out the old gauze and packs a new gauze in it.  That's about all.  If I forget to have him change it, sometimes it will get rashy.  Will it heal?  I'm guessing no.  Can I have surgery?  Only if I go off chemo, and I'm not doing that anytime soon.  So yeah.

I'm totally open and willing to talk about cancer.  Questions are always welcome!!! 

Sunday, July 22, 2012

Guilt

Eric:  I found a blog you might like, I'll post it on facebook.
Me:  yeah, mumble, mumble

It's not that I don't LIKE other blogs.  I usually love them.  The knowledge though that there are sooooo many other cancer blogs bums me out, to be honest.  But I said I would check it out, so I did.

Wow.  You should check it out too:  Secrets of Cancerhood

So many things the author wrote resonate with me.  One topic really spoke to me, guilt and cancer.  I know what you're thinking.  I think it too.  Why should I feel guilty?  Cancer wasn't my fault, at least as far as we can tell.

But I do.  At times the guilt is overwhelming.  I don't even know where to begin, so I'll just jump into the deep end.  I have horrible guilty feelings that I might die and leave my children without a mother.  Eric without a wife and partner.  They don't deserve that.  I don't dwell on this constantly, but it pops into my head from time to time.  Cancer is very unforgiving and just plain mean.  I know this is a possibility.  And yet when I think about it, there's no way I regret the kids or Eric.  The world is a better place with Reese and Eli in it, for sure. 

I feel guilty that I can't even take care of myself sometimes (okay, most times) on chemo weekends.  What if it gets worse?  I feel guilty that Eric has to pack my butt wound every day, even though he says he doesn't mind.  I feel guilty that I won't feel good enough to go to the church family outing this Friday because of treatment.  I feel guilty that Eli had a very small cupcake party instead of a super cool birthday party because his birthday fell on a chemo weekend.  I feel guilty that talking about cancer makes Reese feel sad.  I feel guilty when I know these thoughts and feelings will make others sad.  I feel guilty that I can't just be normal.  I even feel guilty when someone else dies and I'm still alive.

It's just one big ball of guilt, guys.

Rationally, I know these things aren't MY fault.  I didn't go seeking cancer, inviting it into my world.  I can't help what the treatments do to me.  I get it, I really do.  Yet there it is.  The guilt.

So what do I do to combat it?  I try to be gentle with myself.  I try to remember that I need to share with others what I'm going through so they can minister to me and my family.  I love on Eric and the kids as much as possible.  I pray for strength and courage and faith.  I try to think about and care for other people when I can.

If you have time, check out the blog I posted, and find her writings about guilt.  She's wise.

Pray for my family and me as we walk this difficult walk. 

Philippians 4:13   I can do all this through him who gives me strength.

Friday, July 20, 2012

I'm going out tonight, and I'm super excited.  I'm also nervous.  When meeting new people, I want them to know ME first, not the cancer.  Does that make sense?  Maybe I'm a little jumpy because I've had so many different reactions to my having cancer.  Most people are really great, supportive and everything.  Once in a while, people get...weird.  I have great hopes that it won't be weird tonight.

Thursday, July 12, 2012

I went to chemo today.  If there was ever a day that I wanted Eric to keep driving, it was today, but you know, responsibility and all that jazz.  It was a pretty uneventful day. 

I had my last session with my therapist.  I think she is awesome and I'm going to miss her a lot.  Having a place where I can talk about anything I want and have someone objective hearing me and sharing her wisdom has been so helpful.  I'm glad I took the step to talk to someone.  The new therapist starts in mid-August.  It will be an adventure.

Then it was just the same old same old.  Oh!  I did try out the cafe on the 2nd floor but was disappointed to find that at lunchtime there is no yogurt.  I bought vanilla wafers and fruit and iced tea instead.  Next time I'll skip the vanilla wafers and maybe get two fruits.  Or I'll grab a yogurt from Starbucks.

The other cool thing I found at the cancer center is the chapel. It's been empty the last couple times I went there. Taking a little time to read some Bible verses and pray has really helped me. I think I might build it into my schedule, especially for the next few weeks without a therapist.

Doc says my bloodwork looks good, and as I have no other issues, it was a short appointment. 

Chemo took forever, of course. 

A guy who sat next to me was taking Erbitux.  A woman across from me was doing her first ever chemo.  I didn't really talk to either of them, just eavesdropped while pretending to watch Daria.  I never know what to say or what to ask, or even whether or not to start up a conversation.  I prefer to be alone when I'm doing chemo.  And what would I say to the Erbitux guy, "Yeah, I had that, it didn't work, but hopefully it does for you."  What about the woman just starting, "I've been doing chemo for three years almost, but I'm sure you'll finish your prescribed number of rounds and be just fine."  I prayed for them instead, it just felt more right than trying to think of what to say.  It's hard for me to feel encouraging when I'm being pumped with poison.

I was relieved to finish chemo today.  I just wanted to get home and rest.  Please pray for me.

Tuesday, July 10, 2012

Well!  We're back from a quickie tour of WI.  It was so much fun, great to see people I haven't seen in several years.  Nice to have other people make coffee and figure out what to cook for dinner.

But now I'm back wishing I was still on vacation, with Chemo looming in two days.  Ugh.  I don't think I was ready for the real world.  It's storming in Cambodia, and I'd love to be there to see it.  I bet it's beautiful at the beach (any one, pick one).  My mom and mother-in-law both have comfy chairs and lots of kind words.  It's an "anywhere but here" situation. 

I'm glad to be home.  My cat missed me.  I missed her too. 

Here's hoping that I can shake the blahs and get some things done. 

Sunday, July 1, 2012

Happy Birthday to Me!!

I'm 35 today, and I'm soooooo happy that it's my birthday.  There's a lot of uncertainty involved with cancer, of course, so every birthday to me is a blessing.  I love the hugs and the birthday wishes.  It's been a great day so far.

I wonder what this year will bring?  I'm excited and hopeful.

Wednesday, June 27, 2012

And...chemo!

First of all, I want to say a huge thank you to everyone who sent messages with words of encouragement and promises to pray.  I needed it yesterday more than you can know.  Despite the chemo, today has been a much better day emotionally.

So, chemo.  I got my own room today, suckas!  It's kind of nice to know that people aren't watching me drool while I nod off.  It was very quiet.  Nice today.  I'll get the pump off after lunch on Friday.  Very uneventful.

My plan now is to rest and knit.  I finished up some surprises and I'm now moving on to a dress for Reese.  We shall see how that turns out.  So far, so good, I think, although I never quite know until I'm finished.

If I don't pop in for a week or so, no worries.  Our family is going to do some traveling.  :)

Tuesday, June 26, 2012

Scan Day

I've been at the cancer center pretty much all day.  I actually got home around 3pm and would have updated right away, but I needed some time and Eli needed some attention.  Sometimes I need a little space from results.

The results of the scan weren't terrible, but they weren't super good either.  10% growth, a couple of millimeters in some of the tumors in my lungs, which is considered within the margins of error.  The doc said he wasn't worried, but he didn't call this scan stable either.  Everyone is assuring me that it could be as simple as the person doing the measuring being a different person this time.  The plan is to keep on the same chemo and wait and see.

So it's kind of medium news.  I guess.  Honestly, I'm disappointed.  I pitched a bit of a fit in the car before leaving the cancer center.  I feel like I'm a good person, I have a nice family who needs me, and why do I have to keep going through this?  Deep down, and once I got some space, I know that this has nothing to do with how good of a person I am. 

I'm feeling really down right now.  That's not really a good mindset to go into chemo with, but what can you do?  This isn't all sunshine and roses, it's real and sometimes real is ugly.  Please pray that I can lean on God to help me straighten my head out and get ready for tomorrow.

Monday, June 25, 2012

So.  I have a scan tomorrow.  I was able to blow it off in my mind until I picked up my barium last Thursday.  Suddenly the scan becomes real when I get the barium and paperwork.  I wish I could say that I'm going into it confident, but man, I'm so not. 

How appropriate that the sermon at church yesterday was about courage. 

I've had countless people tell me I'm strong, brave, etc.  I don't feel like any of those adjectives most of the time.  Okay, really at any point in time.  I told my therapist once that I forge ahead because I have to, I don't have a choice.  I have people depending on me, and I don't have time to live life curled up in a ball under my covers.  She gently suggested that perhaps I do have a choice, that there are people who, in my situation, would hide away and not step up.  I can't imagine doing that. 

The biggest thing I took away from the sermon (hopefully this was one of the big points!!) is that courage is the strength to obey God even if I am afraid and even when it is hard.  Is persisting in taking care of my family and going to treatments obeying?  I like to think it is.  I'm here for a reason, and since I am still here, God wants me here.  Wouldn't it be really lame of me to turn tail and run away from treatments or my responsibilities? 

One of the things I did at the suggestion of my therapist was explore the definition of courage.  I decided to see what the Bible says about courage and found this:

2 Corinthians 4:16-18  So we do not lose heart.  Though our outer self is wasting away, our inner self is being renewed day by day.  For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen.  For the things that are seen are transient, but the things that are unseen are eternal.

There are tons of verses about courage in the Bible, which leads me to believe that I'm not alone in how I feel.  It's comforting to me that I'm not alone in this struggle.  I'm not the only person who every day asks for help and faith and trust.  I'm not the only one who needs encouragement to not lose heart.  Don't you think that's amazing? 

And with that, I face my To Do list, the great Getting Ready for Chemo.  Well, perhaps more coffee first.  :)

If you don't mind, please pray that I can have faith and courage like Rahab.  And if you don't know who she is, go get your google on.  It's a good story with a happy ending. 

 

Sunday, June 17, 2012

Another chemo down!

It was an uneventful chemo day, just really really long.  I didn't finish infusion until 6pm because of my schedule.  Blech. 

Not a whole lot to say about it all, I guess.  I'm tired but I can't sleep.  I don't want to do much of anything.  Hopefully I'll be feeling better tomorrow.

Thursday, June 14, 2012

But, but...you look really good!

I don't go about announcing the fact that I have cancer when I meet new people.  First of all, I don't want people to pity me right from the get go.  Secondly, I don't like the limitations that sometimes go with a cancer diagnosis in people's minds, which then sometimes translate to our interactions.  So unless someone pretty directly asks, I just pretend I don't have cancer.  Good for me, good for them, right?

However, if someone does ask, I won't lie.  Last night, I was volunteering at church for Vacation Bible School.  I've been reminding the people in charge that I won't be there tonight, and last night one of the other volunteers, in casual conversation, "So do you have to work Thursday night?"

Ugh, here we go.

"Actually, I'm going to be at Baylor getting chemo tomorrow," me, trying to sound casual too.
Shocked face, "What?  You have cancer?  But you look really good!  You have all your hair!"

It's good to know I don't look like crap, huh, guys?  The typical questions start, what kind do you have, how long have you been getting chemo, etc.  And I don't know if it's the shock or what, but almost immediately the other volunteers aren't talking to me, and really aren't talking at all, in the same way they were.  They encouraged me to go Friday night (I'm not sure I'll feel up to it) to just hang out, which is nice.

Maybe there's a reason this particular group of people needed to hear about my cancer.  At any rate, they heard about it.  I've changed their perceptions of people with cancer, that's for sure.  I suppose it's my fault for praying that God will use me in ways that will glorify Him.  Maybe that's what is happening and I just don't see it.  I don't know.  I just want to do the right thing, you know?

Chemo day today.  Big surprise, but I wish I could run away.  Pray for me.

Tuesday, June 12, 2012

Freaking Out

Tuesday is the day I typically lose my shit, guys.  I look around and look at my to do list and internally I start feeling whirly.  I can't do chemo on Thursday with the house looking like it does.  There is next to no make ahead food ready.  Thank goodness the grocery shopping is done, but I spent all morning doing that (well, and a stop at a yarn store, but I have to have a little fun). 

Sigh.  I just don't feel mellow like I normally feel.  I feel all keyed up and jittery (no coffee to blame on that one).  Part of me doesn't even know where to start with my list.  Ugh.

I've talked to my therapist about this.  She suggested that I'm taking control of totally rational things (the state of the house, prepping meals, etc).  Control is hard for me.  I used to have this planned out life, I was in charge, I knew what was going on, it was all me.  With cancer in my body, I feel like so much of my life has been snatched away.  A chunk of my time has been taken every other week.  The amount of things I can do is limited at times.  What I want to be just doesn't work out when I'm on chemo.  It's hard.

I'm trying to let go.  I'm trying to trust God's plan and trust His blessings for me. 

Jeremiah 32:17  Oh Lord, you have made the heavens and the earth by your great power and your outstretched arm.  Nothing is too hard for you.

Right?  I don't think God wants me to be freaking out about chemo.  I know He wants me to rest in Him.  That is so hard for me.  For what's left of today, I'm going to try to remember that I don't have to control everything. 

Thursday, June 7, 2012

I've been trying to pay attention to when I start feeling "normal" after chemo.  Most of the time I'm so busy just making it through each day that I don't notice.  Today though, I realized that I just feel better.  I have more ambition as opposed to the last few days of wanting to knit or play Wii all day long.  Heck, I'm making my own BBQ sauce today and yesterday I had Eric starting dinner.  Stuff is getting cleaned.  It's pretty awesome.

However, this also means that it takes about a week for me to feel "normal" after chemo.  That's a drag, isn't it?  And frustrating.

In other news, I'm scheduled out until the end of July, and have a scan on June 26th.  One chemo before that though, so I probably should focus on what's close and not what's a few weeks off.  I'm really working on NOT worrying, and remembering that God has a plan and is taking care of business. 

Prayers, of course, always welcome!

Friday, June 1, 2012

Chemo Thursday!  Well, it was yesterday.  Yeah.  The doc's nurse estimated I've done something like 50 rounds of chemo total.  Could that be right?  I forgot to ask Eric last night, so perhaps he'll see this today and comment with his count.  Anyhoo, that's a lot of chemo.  I feel so blessed to have been given a body that can handle it and bounce back. 

It was a long day, starting at 8:30ish when Eric dropped me off and ending at around 5pm when he crashed the chemo lounge to find out what was taking so long.

But let's back up.  After I cried and yakked at my psychologist for a hour, I went up to have my labs drawn.  The nurse had to stick me twice!  :(  Sad face.  She apologized and also complimented me on all my tattoos, so you know.  I'm okay with it.  A quick look just now and no really bad bruising.  Then I went down to wait for the doctor.

The doc's nurse made me walk up and down the hallway to assess the neuropothy in my feet.  I walk fine, by the way.  I haven't honestly noticed a big change in the condition of my fingers and toes after last time...maybe I'm just getting used to it?  A next step for me would be to get out walking/running again.  I'll make it a goal for next week.  The doc didn't have a lot to say.  I'm getting a different heartburn med because mine stopped working suddenly.  A calcium/magnesium mix was added to my chemo regimen.  Apparently there had been a shortage, and now it's available aplenty.  It's supposed to help some with the neuropothy.  The doc approved me for chemo, so back to the waiting room!

It turns out, the cal/mag adds a little over an hour to my chemo chair time.  Ugh.  It felt like I was there forever.  It's so frustrating to see people walk in, get their chemo, and leave while I'm still sitting around.  I slept a little bit, knitted a little bit, watched Daria, ate snacks I pilfered from the refreshment room...the usual stuff. 

I wish I had some funny stories or something from yesterday.  Oh!  I did spray coffee on the desk of the check in lady!  That was embarassing.  I have a cup with a fussy lid.  Other than that, pretty uneventful.

I was exhausted last night, but woke up this morning to an Eli in my bed and I felt better.  Please pray that chemo weekend goes well and quickly.  :)

Tuesday, May 29, 2012

Want to see what I did this weekend?

Fossil Hunting

Picnic by Lake Texoma



More by the lake


Of course there is a freak ton of things, memories, that I didn't show you.  Dripping ice cream cones, road trip coffee, the blanket full of little burrs, watermelon, cows, horses, goats, driving...It was a very good weekend. 

I go back and forth between "I'm going to live forever!!!" because I feel so good and thinking dreaded thoughts about dying before I want to.  Of course, no one lives forever, and I'm confident that after death I'll be in a wonderful place with a body that doesn't have cancer.  I just feel like I'm needed here, you know? 

Anyway, I'm so glad for weekends like this, for experiences, for laughter, for fun.  It gives me space to be away from cancer, at least for a little while.

The week has already started, I have chemo this Thursday, and wow, you should see the disaster that is my house!  Gotta get to work!

And because I know I need it, please pray.

Thursday, May 17, 2012

Most of you probably know that my scan was good today!!!  Stable tumors, and if there was growth, it was very very small.  I will take that, thank you.  :)
Eric joined me at the cancer center (he worked and I yakked at my therapist and used up all her kleenex).  Later we went to the lab and I was told I didn't have an appointment with them.  What WHAT?  It wasn't a big deal, I just went back up after seeing the doc.

The doc came in all smiles, I knew he had something good to tell me.  We chatted a bit about the tumors, and I'm going to continue FOLFOX/Avastin until the next scan.  He checked me over and I passed, my blood work eventually came back, so off to chemo I went. 

Chemo was uneventful, as usual.  I knitted until the ativan kicked in, then watched Daria and dozed off. 

So this week has been my week of waiting.  Not trying to take control or fix things myself, but to just pray and wait.  I listened to a sermon about waiting last weekend, that it's important to sit still, stand still, and be still so that God can work on things in HIS time, not in my time.  So I focused on that.  Praying in a bold, confident way, and being willing to wait.  It wasn't easy.  In fact, it was pretty freaking hard at times.  After all, I know what's best for me, I know what I want. 

Psalm 40:1
I waited patiently for the LORD; he turned to me and heard my cry
And then, after the results today, this verse stuck out at me:

Romans 8:28
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

So yeah.  I'm feeling relieved and thankful and so so glad.  Everyone who prayed and/or thought about me, thank you so much.  I believe it really does make a difference.

I'm going to go rest now...I feel blah.  Have a good weekend all!!!

Friday, May 11, 2012

I've felt off all week.  Restless, anxious, nervous, sad.  Scanxiety at its finest, ladies and gentlemen.  It hovers like a cloud and whispers worries and threats into my ears.  It forces me to deal with feelings about having cancer and about life.  It's uncomfortable and very much unwanted.  It leaks out into relationships, parenting, and hobbies.  Maybe describing it will make it go away?

Worrying won't change my scan results.  It won't take my cancer away.  The logical me knows this.  Why can't the emotional me get on board? 

Sigh.  Scan is Wednesday. 

Tuesday, May 8, 2012

Reese, Eli, and I were out and about this morning, having coffee with friends and making a quick library stop.  On the way to the library, we drove past a park with kids all over the place, so on the way back we decided to check it out.  The kids ran to play, and I sat down to knit. 

It was such a weird feeling, sitting in a park watching the kids play with other moms and little kids all around.  What a flashback to our days in Wisconsin, when the kids were younger, before cancer was on my radar.  I miss those days when the biggest worry was losing five pounds or how was I going to get Reese to sleep already.  As Uncle Rico says, "Don't you wish you could go back?"

Since going back isn't an option, forward we go.  One day at a time, holding on to faith.  Enjoying the park days and school days and coffee days and knitting days.  Lots of hugs and laughter.  I think that's the best anyone can do.

Thursday, May 3, 2012

Chemo #12

Can you believe I've had 12 cycles of chemo here in TX?  Gosh, me either.  I was a bit surprised.  Time flies when you're being pumped with poison?

Anyhoo, it was a pretty okay day at the cancer center.  I got to ride in a taxi cab because Eric is out of town and I'm not really supposed to drive while I'm hopped up on Ativan.  My Korea Starbucks mug and I stopped for coffee, and then I hung out with my cool therapist for a while.  She's very wise.

After that, I went to get my labs done.  Then it was back downstairs to check in to see my doctor.  When I walked into the waiting room, there was a freakishly huge dog!  Seriously, it was the biggest dog I've ever seen.  I momentarily wondered if it would transform into a person ala Twilight, but it didn't happen.  I suppose I should be content with just seeing that huge thing.  It is a therapy dog, and I guess after their interview (yes, they were being interviewed!!) the dog got to walk around the waiting room, but by then I was back with the doctor.

Not a lot to report from the doctor.  My labs were good.  I felt fine.  I mentioned to the nurse that lowering the dose of oxaliplatin really helped me feel better overall...I was still really tired last chemo weekend, but maybe not as sick.  As the nurse was looking over my chemo notes, she suddenly said, "Oh.  It looks like the doctor didn't lower the dose after all last time."

Then why didn't I feel as sick?  It could be the extra protein I got from eating greek yogurt and eggs.  Yeah, not exactly vegan foods, huh?  Eric read a thing about protein and it's probably true that I could be lacking, especially during chemo weekends.  I used to be all about protein smoothies, but with the cold sensitivity they're hard to drink.  And I don't know about you, but warm protein shakes are not good.  Also, it does not help that I have zero appetite from the day I have chemo until mid-week the next week.  I feel really jerky about eating eggs (and I guess the yogurt too)...I know how animals are treated in the "industry."  I'm going to work to find animal-friendly, good practices for these foods.

Anyhoo, I got the all clear for chemo, took a nap, and a taxi brought me home.

I hope I can lay down soon. 

I hope you're all praying for me.

Wednesday, May 2, 2012

Cancer frustrates me, it frustrates me because of what it has done to my body.  I cried last night because in many ways, my body doesn't work the same way it did before cancer.  I could start listing all the ways cancer has changed my body, but it feels so much like complaining.  Amazingly enough, I don't really feel like complaining.  So I'll just leave it at general frustration and irritation.

Chemo tomorrow.  I've been cracking the whip at the kids to get them to help me clean up the house.  Today I'll do some cooking ahead, that makes it easier for everyone, I think. 

I'm in a good place, a positive place.  For a chemo week, I think that's pretty good.  I'd still appreciate prayers though.  :)

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 numb...it'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

Ugh

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.

Meh.

Please pray for me.

Friday, March 30, 2012

Vacationing with my Ostomy

I admit, I was a bit nervous about the whole Ostomy on Vacation thing.  Before we left, there was a great deal of pondering about how many supplies to bring.  I read a rumor that the pouch would puff up on the plane (false, guys, false, even the pouches with no filter).  I worried that some J-hole would make a big deal at one of the airports. 

Overall, I was very glad to have an ostomy.  No one hassled me at any of the airports.  Completely unwrap and "test" the statue Eric bought?  Yes.  Not one person wanted a peek at the pouch.  They were more concerned with why I had two DVD players.  I emptied before I went through security and again before I got on a plane (as needed).  I had extra supplies (no scissors of course).  It was easy.

In Cambodia, it was no big deal.  The only time anyone even saw it was during a massage, and the woman's main concern was whether it hurt.  Again, I carried extra supplies with me.  Towards the end of the trip, we all got some sort of intestinal thing.  It was super nice not to be tied to a toilet.  Ostomy pouches are so portable!  As long as I could find a bathroom to empty, it was all good.

As far as how many supplies to bring on a trip...I read somewhere to bring three times the amount I would normally need.  That amount of supplies was WAY too much, but I wouldn't have wanted to run short on anything.  I was glad I had plenty of pouches and wafers.

So if you're considering a vacation, don't let an ostomy hold you back!  Vacations rule!!!


Don't miss out on seeing cool stuff like this!!!!  :)

Thursday, March 29, 2012

It's a Monkey Kind of Day!

The kids asked to see monkey pictures from our trip today.  I thought I would share!


We are feeding the monkeys lotus seeds.  People can eat them too, and they don't taste too bad (the lotus seeds, of course, not the monkeys).


A monkey nursing a baby monkey!  Awwwwwwww.


The little buggers climbed right into the tuktuk!  We were surrounded!


Goodbye, Monkeys!!!  Thanks for not giving us some weird monkey disease!

Tuesday, March 27, 2012

Gosh, you guys

I get choked up when I realize how many people are paying attention and how many people are praying.  I do have a ct scan coming up next week.  It was originally supposed to be this week, but got moved.  I'm enjoying the extra week off.  :)

Sunday, March 25, 2012

I wish the real world would just stop hasslin' me

We've only been back for a few days and I'm already tired of dealing with schedules and trying to arrange child care and trying to call and get answers and having to talk to voicemail (and never getting a call back...). 

Sigh.  Breathe.  Breathe.

It's probably not all as big a deal as it is in my head.  I didn't expect to go from relaxed to stressed out right away.  I was going to be chill, not worry.  Time to put that into practice, right?  It appears I have another free week.  Awesome!  The kids and I can get homeschool back on track after being in vacation mode for about a month.  I have a fun sewing project that I would like to get done sooner rather than later.  Maybe I'll cook some delicious food.  I'm still pondering how to organize a way to share pics from our trip.  The weather is going to be nice.  There are tons of good things about another week off.

Okay, I'm still a little irritated.  So here's some Cambodia pictures!


Minature Carving of Angkor Wat



My favorite dish, and pretty much all I ate in Cambodia, fried noodles with vegetables

Our tuktuk driver gave me a cooking lesson so I could learn how to make...fried noodles!  This is his kitchen.

:)

Thursday, March 22, 2012

Welcome Home!!

I think if my little cat Oliver had the means and supplies, she would have created that banner.  Usually when we leave, there's a period of great cat anger when we return, but I guess being gone for 22 days and sending in a stranger helps with that.

Yes, yes, we are home!!  I will get my life together and post about the trip as soon as I can.  Thank you for positive thoughts and prayers!!

Tuesday, February 28, 2012

I went to see the wound care doctor today.  Wound looks fine, iodoform is still working fine, everything is fine, just fine.  I kind of feel like this whole wound thing is a waste of time, although I'm sure the kids enjoyed the hot chocolate and chips at the little deli that is in the same building.  After the wound checked out, the doc was all, "All right, we'll see you in three weeks or so."  "How about six weeks?" I asked. 

So I go back in six weeks.  I assured the doc that I would call if I had any issues. 

Technically they drop people out of the wound care program if they go more than 30 days without seeing the doc.  I have a feeling they don't get many patients like me.

Anyhoo, time to pack like a banshee!!