What I think I heard…

Yesterday was a big day for our family.  Many of you let us know through fb and texts that you were praying for us and that is so appreciated.  We had our first follow up with the radiation oncologist since Dad had finished his round of treatments.  The anxiety leading up to this meeting came from the fact that Dad has displayed some serious side-effects that we believed were caused by radiation but were not prepared for prior to his treatment.  The meeting went well. (I kept my inner Ninja in check).  I’ll use my friend the bullet point to share the info I think I heard…

*Somnolence syndrome – while this occurs mostly in children and to a very specific degree of onset to the time it will end, this is a possibility for Dad’s confusion.  And if this is the case, we should start seeing some improvement very soon.

*MRI – is it clear or not? I am still not sure what I heard.  The doctor said that there was a large area that appeared abnormal; does that mean that the gray area is hiding cancer cells? We don’t know.  It could very well be scarring from the cancer treatments.  The doctor did not have a chance to view the scans prior to our visit because some program was down.  (well good golly, this appointment was rescheduled 8 weeks ago, have you been on Mars playing with Curiosity, because I would have liked to have heard your medical opinion, other than the “I am not sure”.)

*Dementia v. Delirium – We do not have Dementia.  This is good.  Dementia cannot be reversed.  Delirium is a stage.  It goes with that Somnolence Syndrome.  The oncologist is scheduling an appointment with a Neurologist and we hope to get more info at that time. 

*Lab work – Dad’s kidney function set off alarm bells yesterday.  This is not surprising considering how little he takes in.  He received a polite little pep talk about increasing his fluids to avoid dialysis.  We’ve begged and pleaded and Juju threatened waterboarding yesterday.  Fingers crossed Dad picked up on the urgency and we will see better results next lab test.

EDIT - As this blog went to press, the oncologist's office called and wanted Dad to come in for IV Fluids.  What I think I heard is their reaction to the radiation oncologist making a big deal out of the kidney function yesterday and they figure if another doctor was waving a red flag, they should take another look.  We have been telling them for 6 weeks that Dad wasn't getting the intake he needed.  And while YES it is Dad's job to drink the dang fluid, to quote the radiation doctor, we have taken him to the edge of  the cliff in treating him and his brain might not be making the right connections.   How do you force hydrate someone?  Short of Juju's water boarding, I think the IV is the right answer. 

Now back to your regularly scheduled blogging...

*Weight – 30 lbs in 3 months.  Not a diet I want to be on.  We think we have found something that is helping.  Dad has the munchies… make your own inference. LOL

*Favorite daughter – While the doctor was testing some of Dad’s cognitive functions with questions, I had to jump in and ask the most important one, “Who is your favorite daughter, Pops.”  He looked at the doctor and grinned and said he knew better than to answer that.  Yep, that’s my Daddy!

*Praise for the family – The doctor made it very clear to Dad that he has the best care-takers working around the clock to make sure he stays safe and are nurturing him back to health (the praise goes to MOM!!! She is our family Angel).  He said we were doing the right things to try to get to the bottom of what was causing the symptoms by eliminating possible culprits one at a time; we have paused any further chemo, we are weaning off of steroids.  We go back to doctor in 2 weeks and hope to see some improvement.

This journey has been full of twists and turns, just like the road to our favorite cabin on Mt Nebo.  Our goal is to have Dad up and running so that we can go watch the sunset from the deck of Cabin 70 come October.  That may sound like a lofty goal to some, but we have never waivered from the fact that we believe in miracles.  I could name several we have already encountered and we believe there are more to come. 

We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We are knocked down, but never destroyed.  --2 Corinthians 4:8,9 (Thank you Juju for sharing this with me!)

I think the truth is going to hurt

I have always tried to be open and honest on this blog.   If I have shared something on here, it is the truth.  But what about omission?  Isn't there a saying about "lying by omission"?  If you believe that by not telling 'everything', you are not being truthful, well,  guilty as charged. I have not shared some nitty gritty details about Dad's current condition.  Partly out of concern.  Partly out of putting on a brave face and keeping it positive. Partly out of if you don't put it in writing, it can't be true.

Dad's journey is nearing the 1 year mark.  His diagnosis was an inoperable brain tumor on November 4th.  During that time he has received 6 rounds of in-patient methotrexate chemotherapy, 25 rounds of WBRT (whole brain radiation therapy), and 2 rounds of outpatient intrathecal (directly into spinal fluid in the back) methotrexate chemotherapy.  He has been a fighter through it all.  Not always a happy fighter, but a fighter nonetheless.

Julie and I have both blogged about this journey.  She has always been uplifting and encouraging in her blog. I have probably blogged more from a place of anger.  However,  you might have noticed that her last few posts have had just a tad bit more bite to them.  She is angry at cancer.  I am angry at cancer.  We are both having to face the truth.  Actually, let me back up a bit and give you some background.

Dad has responded to every treatment.  Current standings on his MRI and CAT Scan are clear.  All clear.  So why are we still angry?  Because the treatment has wrecked havoc on his health.  He has lost too much weight, he has moments of not being sure where he is, and his strength and balance have taken huge hits.   We never wanted this.  In fact, we asked specifically before agreeing to the WBRT what the side-effects would be.  We were given an analogy about forgetting car keys more often.  Dad expressed a specific concern and was assured that the dose he was receiving would not produce that effect.  Guess what? That was not the truth.

We will have our first follow up with the radiation oncologist this week.  I want the truth.  Is what we are seeing permanent?  Why are we seeing it at all when you promised that the doses Dad was receiving wouldn't cause these affects?  Since the machine was always breaking down, did Dad receive too much radiation?  I want the truth.  Even if it hurts, I want the truth.  And hopefully having Mom and Julie by my side will prevent any violent outburst at the doctor for speaking a truth that I don't want to hear.  Yeah, I am scared the truth is going to hurt.

Stories from the DMV...

*Disclaimer, in case the humor doesn't come through, this is not an attack on old people.  It is meant to be light hearted and funny.  My apologies to anyone over 80 reading this that is offended.  I'll send you a case of Ensure and a bottle of Centrum Silver to keep you as a faithful reader. (see, that's humor)

Time finally caught up with me and I had to go to the DMV and have my license renewed.  I guess a 6 year old picture is as long as they will let it go.    After the fiasco with Hunter's test and dealing with the b*tch (sorry Mom, there is no other word that would suffice to describe that awful, evil, spawn of satan, lady) that works at the Decatur office, I headed to Weatherford, TX.  I have heard nothing but great things about this office.  It's really not too far and it's a quick in and out.   Except when I show up.  Of course.   Nothing can be easy.  Oh boy!  Or should I say Old Man!  That is where the problem all started.

I actually arrived at the office by 8:35 and it wasn't a Monday or Friday so I imagined an easy breezy process.  Only 5 people ahead of me in line.  Yay!  You would think.  But the line didn't move.  An old man at the counter appeared to be having trouble with his fingerprints.  The lady was cleaning the lens. No luck.  She had to start over which meant her machine had to reboot from the beginning.  Instead of keeping him there and letting HIM and his no blood pressure fingers wait, they moved him over to the next machine.  Try again.  Guess what?  It didn't work. Shocking I know!  Must reboot.  Another computer tied up.  People in front of me getting very anxious.  In the meantime, one of the clerks with a frozen computer comes out into the crowd checking that everyone has the right paper work and being the hostess with the mostess.  She finally gets back to her computer and calls the next guy in line.  He is so excited. Wait for it. Wait for it.  He is sent back because she decides to give the old guy another shot.  I don't even have to type what happens next do I?  Now the conversation turns to perhaps running his hands under some warm water or using a warm paper towel on them before he puts them on the scanner.  Are any of you thinking what I am thinking?  THIS DUDE DOESN'T NEED TO BE DRIVING!   I get that you can't discriminate against old people. They have rights too.  Lets not forget that I have a Dad with brain cancer.  I get it.  But you don't see me hauling him up to the DMV to get his license renewed.  If your blood isn't making it to your fingertips and warming them enough to be read on a scanner, take a cab!  Where were we?  Oh yeah, we are still 5 deep in line and the old man has been sent to a THIRD machine to try and get his prints. I actually said out loud, "Oh dear sweet Jesus." Wait for it. Wait for it.  It WORKS!!!!  We have prints.  And the guy behind me in line starts clapping.  Funny stuff!  But since this isn't the original machine he started on, we have to do the eye test. Read line 4 please.  Huh?  The clerk holds up 4 fingers and repeats to read line 4.  Mumbling.  I guess he passed. The clerk moved him to the screen and he gets his picture made.  Now I am clapping.  But only inside my head.  We can begin moving forward.  Next guy in line steps right up.  Easy breezy.  Next guy is actually a 2 fer... He is there to help an older Asian gentlemen.  Snag.  No green card.  If you are hoping for more drama, sorry. They left without a fight and I only had to wait for the Mom/Son duo in front of me.  $25 bucks later I have a new "headshot" for my DL.

See ya again in 6 years for more "Stories from the DMV"!

God's Playlist

I find comfort, solace, inspiration and hope in music.  I wish that I could sing. On key. I look forward to Heaven knowing that I will be able to sing with the angels. On key. To the glory of my Lord and Savior. 

I have blogged about God's playlist before.  Sometimes it's the songs that are randomly played on the radio when I am driving, but I also have a playlist on my iPod titled "God's Playlist.  That's the list I am sharing with you today.  

1. Good Morning (feat. TobyMac) - Mandisa   I am not a morning person.  I love this song to come on first thing to help get me going and to get my mind focused on the hope of the future.
It's a good morning!
Wake up to a brand new day
This morning,
I'm stepping, stepping on my way
Good morning,
You give me strength,
You give me just what I need
And I can feel the hope that's rising in me.
It's a good morning

2. I Smile - Kirk Franklin    This is a new one to the playlist.  I was watching PTL with Mom and Dad the other day and it was a special program hosted by Steve Harvey and Kirk Franklin.  Kirk sang this song with his back up band and I had it downloaded after the first verse.  As you read the lyrics below, I don't need to explain what this songs means to me.  You know exactly why it is number 2 on my list.  I play this song every time I get in the car to go home after visiting with Mom and Dad.  As I sing along, loudly, not on key, I try to feel the power that God is sending to me to put a smile on my face. 

Today's a new day, but there is no sunshine.
Nothing but clouds, and it's dark in my heart
and it feels like a cold night.
Today's a new day, where are my blue skies,
where is the love and the joy that you promised me
you tell me it's alright.

(I'll be honest with you)
I almost gave up, but a power that I can't explain,
fell from heaven like a shower now.

(When I think how much better I'm gonna be when this is over)
I smile, even though I hurt see I smile,
I know God is working so I smile,
Even though I've been here for a while (what you do?)
I smile, smile..
it's so hard to look up when you've been down.
Sure would hate to see you give up now
You look so much better when you smile, so smile.

3. Hold On - TobyMac   Another song about letting the sun (Son) break through.  I am also thankful for my "crazy friends" and for those that have let me put my head on their shoulder and just be me.  Whether it's "angry" me, "sad" me, or "anxious" me.  I couldn't do this without my friends encouraging me to "hold on". 

Wake up to the morning light
wipe away the lonely nights
let a brand new day wash over you,
Wanna see you smile again
show some love to your crazy friends
wipe your tears away
those days are through

If you move just a little bit closer you can put your head on my shoulder
Yeah, yeah

[Chorus:]
So baby hold on
just another day or two
I can see the clouds are
moving faster now
and the sun is breaking through
If you can hold on, to the one that's holding you
there is nothing that can
stop this crazy love
from breaking through

4. Losing - Tenth Avenue North   If you have been a reader of this blog from early on, you know I have had my struggles with "the church".  I have struggled to recover from being deeply hurt by a certain church. And not the building. The people inside.  I still can't wrap my mind and heart around how people who profess to be Christians acted in such an un-Christ-like manner.   When I heard this song, I cranked it up and said, "Lord, please give me the Grace".  I know that it will only be through HIS Grace that I will ever be able to move on.  Dear friends who experienced much the same thing by the same people shared a book with Hubby and myself and after I read it, I will talk about it here. But for now, I plead with the Lord each time this song plays.  Isn't it ironic how much time I have spent trying to get over this when, without a doubt, the offenders have most likely spent exactly zero seconds thinking about how they hurt me?  I am trying. 

I can't believe what she said
I can't believe what he did
Oh, don't they know it's wrong, yeah?
Don't they know it's wrong?
Maybe there's something I missed
But how could they treat me like this?
It's wearing out my heart
The way they disregard

This is love, this is hate...
We all have a choice to make

Oh, Father won't You forgive them?
They don't know what they've been doin' (oh no)
Oh, Father, give me grace to forgive them
'Cause I feel like the one losin'

5. Center of It - Chris August   This song is just my reminder that I am not the center of the universe.  God is.  If I look to my left, to my right, in front and behind me, I will see people who are experiencing their own hurts.  It would serve me well to stop and say a prayer for those people.  When I get down, when I want to stay in bed all day, I am reminded that God is "bullseye".  He is the center.  Focus on Him.  I turn to my favorite verse, Jeremiah 29:11.

Somedays I'm feelin' like I

Can't win, can't get it right and it

Don't matter how hard I try

Today is not my day

When it feels like I'm going crazy

And it looks like nothings changing

Come sun come rainy day

You are still the same

In the dark, in the light

In the morning and night

In the good, in the hurt

In the places I hide

When I rise, when I fall

You'll be there through it all

At the start, at the end In the center of the center of it

If I could send each of you a $10 iTunes card so you could download these songs, I would do it in a heartbeat.  I know what it means to me to be able to turn up the radio, and sing. Loudly. If you have a song that speaks to you, encourages you, gives you hope, provides comfort, I would love to hear about it.  

I am so confused...

My mind is running in a million different directions.  I am not sure it is even coherent enough to make it through this blog, even with bullet points.  I am down to about 15 views per blog so I am pretty sure the 15 of you reading this won't mind if this post leaves you saying, "Oh my cookies, what happened to her."  Without further delay, here is what is flying around my brain...

*Today is Mom's birthday.  I am taking dinner down tonight.  She is our family angel.  Always taking care of others.  Never doing anything special for herself.  Her crown in Heaven will be the brightest, shiniest, blinged out crown for all to see.   And it is going to be that way because she doesn't do all of the wonderful things for the best crown, she does each and every thing out of love.  I cannot begin to comprehend all of the things she has done for others and I know that there are too many acts of kindness that we will never even know about.  That's how she rolls.

*It's back to work time.  In fact, I was asked and agreed to go back a day early to help train in the new teacher professional development.  I am flattered to be asked.  Which I guess is a good thing, because it was followed up by a request to help present a training I received this summer to the entire staff.  That freaks me out.  I have presented info plenty of times to small groups, but the entire district?  That is something entirely different.  In fact, let me let you in on a little secret.... ready?  Teachers are the worst audience.  Every behavior we get on to our students for in the classroom, you can find teachers displaying the same behaviors during inservice.  Talking, texting, doodling, it's all there.  Pray for me.   I will be using extra deodorant that day.

*Dad... sweet Dad.  I don't think I can talk about this honestly here.  We have put up a good front being positive and thanking God for the victories.  And there have been a lot of victories in this battle.  In fact, every MRI, CT and spinal tap has shown that there are no cancer cells.  So why aren't we shouting from the rooftops?  Why aren't we going back to what you would call "normal'?  Because the "cure" for cancer is apparently as devastating as the cancer itself.   I am not going to spill the details/specifics but we have a major battle ahead of us and it's not cancer, per se.  It's getting back Dad's health so he can enjoy being cancer free.

*We aren't the first family to face the trials we are going through.  We won't be the last.  But while you are in the midst, it is like treading water in a very deep pool for a really long time.  And I am NOT a good swimmer.  

Thanks for hanging in there while I let my brains fall out.  I'll try to do better next time...