Hope Opens Doors

As many of you have heard, Bryce is back in the saddle again.  I write about the mushy feelings of the care taker/wife & he writes about his struggles with cancer.  He is far better about documenting the facts he's been handed as well.  More from him at bastobb.blogspot.com

This time around, I've have even more people saying "But how are YOU?"  That's a tough one.  I'm sure you've heard me mention Julie Koch Lyons before.  She became a young angel when melanoma finally took over.  I have contacted Brendan a few times during this process.  Although he & I weren't ever extremely close, he reached out to me when we started this and told me that he can answer any and all questions from the caretaker/spouse side of things.  The day we got the news that cancer was in Bryce's bones, I sent Brendan a really random facebook message asking "At any point in Julie's battle, did you know that she was going to die?"  I asked this because from my perspective, they NEVER gave up.  They always had faith.  They lived with hope constantly.  Basically, his reply was that they always had hope.  Even when circumstances seemed like they weren't going her way, they still loved God and held on to the hope that there was something out there that would pull her through.

The next day, we met with the surgeon again to go over the CT scan results.  Bryce bravely sat in front of them and said that he was willing to do anything, ANYTHING, to get rid of this.  He may have gave up before his surgery this past December, but he's not going to do that again.  When he and I were talking later, he told me that he knew what it felt like to live hopeless and he wasn't ever going to that place again.  I cried.  Tears that came from joy, sadness, confusion, all of it, but mostly joy.  Once he told the doctors that his goal was to get to 40 years old and he was going to fight like hell, we all let out a collective sigh and Dr. P said "OK.  Good.  Let's do this!"  And the doctors appointments started up again.

He's in Houston currently for many appointments.  We thought it would be yesterday & today.  However, as his secretary and scheduler, the phone calls have stated that he'll be there tomorrow for more appointments.  I'm getting calls from PA's & doctors that are busting their tails to fix my husband.  All he's ever wanted is to get the cancer OUT.  It looks like they are going to try for that again.  It means another surgery.  This will be the worst of the worst.  But what if it cures him?  Doesn't that make it the best?

So..... how am I?  I have good days.  The days where life continues on like normal.  I get the kids to where they need to be.  I do laundry, cook dinner, run errands, fiddly dee.  Then there's bad days.  2 days I didn't want to get out of bed and I cried all day while the kids were at school.  But I am clinging to hope and grasping on to my faith.  Honestly, how do people without faith get through these situations?  I saw this picture on facebook and thought that it basically nailed it. Somedays, I'm not feeling the badassery.  Other days?  Bring it on!  The day I sent that message to Brendan, I felt weak and completely overwhelmed.  He said some really amazing things to help me feel better.  He even helped override the feelings of guilt for ever asking the question to begin with.

For the past couple of weeks (or however long it's been since we got more crappy news), I thought a lot about faith and hope.

hope

hōp/

noun

1. 1.

   a feeling of expectation and desire for a certain thing to happen.
2. 
   

But faith.... oh man.... FAITH!!!!!!

Faith is defined as confidence or trust in a being, object, living organism, deity, view, or in the doctrines or teachings of a religion.

Of course, I desire (feel hopeful) that he'll be cured.  But if I rely on my faith in God, by definition, I can feel confident that God is helping us through this battle.  It's even written in the Bible!!!!

Hebrews 11:1~Now faith is confidence in what we hope for and assurance about what we do not see.

How beautiful is that?!?!?  All God needed to hear from Bryce was that he would do anything to fight.  Bryce begged his surgeons to give him a chance.  Bryce has hope.  He let the doctors hear it in his voice and this surgery is now possible.  Hope opens doors, people!!!!

I may have some bad days.  I may cry.  Some days, I'll cry more than others.  Sometimes, there will be tears and laughter in the same moment.  But I am so thankful that my faith and hope will get me through this.  It will do the same for my beautiful husband.

Additionally, if you see me moping, you have my permission to yell at me, "SUCK IT UP, NANCY!"  That's what I always tell me boys.  And they seem to be totally well adjusted little people.

Life After Lary

Bryce and I got in last night about 8:45 and immediately went to bed.  Yesterday was exhausting and extremely wonderful!!!  The latest news is that the CT scan was clear.  There was a little spot on a scar line that they took a biopsy of, but they feel confident that they are being overly cautious.  It's the spot where he places his electrolarynx to talk.  So it's likely just irritated.  But that's it!!!!!  He'll go back in 2 months for the next scan.

The surgeon actually walked up to us in the hallway while Bryce was weighing in to quickly let us know that it looked good.  WHEW!!!!!!!  I spent the first part of the time in our little room applying mascara.  I didn't want to look like a train wreck for the rest of the appointments if I couldn't maintain control of myself in this appointment with her.

From there we headed downtown for a string of appointments with the head and neck center.  First he saw Jodi, his speech therapist.  She is VERY pleased with his progress.  He picked up some new supplies to try out.  The stoma has gone through many phases during the healing process,so he needs new new and different things.  He was informed that he no longer has to wear a lary tube.  This is fun, actually!!!  It annoyed him.  So no more of that!!

There were great parts of this appointment, and a part that really made my heart hurt.  She wanted to see what he might sound like.  She wanted us to see if he could push air in a certain way to make some noise.  In order to do this, she puts a tube through his nose, down into his throat and asks him to say "AHHH."  NOW.... if you've followed his blog for a while, you'll know how much he HATES to have things shoved through his nasal cavity.  It causes him to gag. severely.  Watching this is painful for me.  I can see how uncomfortable he is.  His body violently shakes, tears start to flow, gagging, gagging, gagging.  I just want to start throwing elbows, rip the thing out and yell at them to leave him alone.  Instead, I sit on the edge of my seat, nails digging into my thighs and try not to tear up myself.  The good news is that after a couple of minutes, he was able to make noise.  We heard a little bit of his own voice.  After that... BOOM, it was over and we could both breathe again.

new supplies

That was all good, bad and ugly.  After he was calm again, he opened up his catalog and started shopping for stuff that he wants to try out.  It was funny.  It was like watching him browse through a catalog for new jeans or something.

The next visits were with the lymphedema people in the head & neck center.  First the guy that worked with fitting him with his new "jaw bra."  Then followed up with one of the ladies that taught us both how to retrain his body to move the fluids out of his neck/jaw area and into another lymph section to help relive him of the swelling that never goes away in his right jaw.

After all of this excitement we were headed for the appointments to remove his feeding tube.  The doctor walks in and lets him know that this was going to hurt.  A LOT.  But only for about a minute.  It was hilarious.  Bryce wasn't expecting that and nearly fell off the bed with laughter.  It was quick!  But it certainly wasn't painless.  She didn't lie.  His belly is a little tender today, but I CAN HUG HIM!!!!!!!  When we saw the boys, Bowen quickly asked Bryce if he could stop worrying about hurting his belly.  It made me think "Wow!!  The boys have had to do sideways hugs because of where their heads hit.  THEY can start to love on their daddy normally too!!"

So that was it.  And we rode off into the sunset to get back home.  It was actually sunset as we hit Katy/Brookshire area.  The sunset was gorgeous.  I think God painted the sky just to let us know:
Hey guys.... I got this!!!!

Mortality

1. 
   

   mor·tal·i·ty

   môrˈtalədē/

   noun

   1. 1.

      the state of being subject to death.

      "the work is increasingly haunted by thoughts of mortality"

      synonyms:

      impermanence, transience, ephemerality, perishability; More

   2. 2.

      death, especially on a large scale.

      "the causes of mortality among infants and young children"

      synonyms:

      death, loss of life, dying "the causes of mortality"

Maybe I'm a little shell shocked.  Three years of cancer can leave a person feeling weird.  This past year started with Bryce & I living separately while we started the process of selling a house, buying a house & him starting a new job.  Then came more cancer, surgery number three, more chemo, more radiation.  And I, with the help of my super organized mom, somehow managed to get all of our stuff up here the day after he finished his treatments last summer.  Just when we thought we were seeing the light at the end of the tunnel, more cancer.  No radiation, but more chemo and the fourth surgery.  This one leaving him without his voice.

A friend of mine dealt with her child drowning & fighting to live.  Even his doctors say there is no explanation for the miraculous recovery her precious son made.  She wrote recently that she thinks she's suffering a little PTSD.  Call it what you want.....  PTSD, shell shock, or maybe I'm just being melodramatic (I do have that tendency), but I am obsessed with death right now.

I'm 37.  I really don't care about age at all.  Some of my friends had breakdowns when they turned 30.  I couldn't wait to be 30.  I had been looking forward to that since I was 17.  Some of my friends have had multiple 39th birthdays, refusing to enter into the dreaded 40's, as they see it.  I really could care less.  Honestly!  But there's been a problem with me lately.  I'm afraid I'm going to die.  In 4 months, 1 week and 2 days, I will no longer consider myself in my mid-thirties.  I'll say late 30's for a couple of years.  Then it's 40 for me.  What is middle aged?  Is that 40?  Mid-40's?  Am I experiencing mortal obsessions because this is middle aged eve for me?

Let's face it.  We've all heard the stories of the healthy guy that dies of a heart attack in his sleep at 40 years old leaving the wife and two kids behind,  Well..... I am FAR from healthy.  I've started working out.  I'm trying to make changes to my meals and other things.  Then, after THREE DAYS of workouts, I freaked out on my husband for a full hour about having nothing to wear to a child's birthday party at a trampoline park.  ENRAGED that he would DARE try to look handsome while I was subjected to a closet full of clothing that makes me look like a pregnant woman in a sausage casing.  I mean..... I had worked out three times last week.  WHY was I still so FAT?!  Tears, stomping, cussing, throwing clothes, shoving the hanging clothes in my closet.  (Remember when I said that I had a flare for the dramatic?)  Then I decided to pull up my big girl panties and stop pushing the limits of my blood pressure.  See....... there it is again.  What if I die having this toddler fit about clothes?  It would HAVE to be a heart attack.  or perhaps an aneurysm.

Yesterday, I was just blah.  A fit of depression?  Just not feelin' it for the day?  I didn't know what it was.  I just didn't want to do it.  Any of it.  I didn't want to get out of bed.  Going to the grocery store was a task that was far beyond anything I was capable of.  Working out....  HAHAHAHAHAAAAAAAAAAA!!!!  I tackled some laundry a little bit at a time.  Between loads, I'd find myself curled back up in bed with a book.  Losing myself in a book was FAR better than any reality I was ready to face.  Then, I finished the book.  As I started dinner, I started asking myself what my problem was.  "Jess, what are you avoiding?"  Then it hit me.

Bryce has a round of appointments on Thursday. I've told myself how excited I am about his appointments.

His schedule an hour ago (keep reading for the changes currently happening):

Drive to Hwy 6 for 8:00 lab work & 8:20 CT Scan

Drive to the medical center for a 10:00 follow up with speech therapy

11:00 & 1:00 lymphedema appointments to see about massage techniques & a wrap thing to get his swelling to go down

2:00 get the feeding tube removed

Drive to Katy to get the results of the CT scan & follow up with his surgeon at 2:30

I'm excited for many reasons.  I get some one on one with the husband.  I do enjoy that.  Hoping to learn some massage stuff to give his face some relief from the swelling.  That's exciting.  The PEG coming out?  YES!  YES!!!  YES!!!!!!!!  He isn't using it.  They tried to put off taking it out for another month.  I threw up a big stink and they're removing it now.  I let them all know (THREE TIMES!!!!) that he's not using it.  He passed his swallow test over a month ago.  The guy has had his cheeseburger and he's back at work.  Give the guy a break!!!!  So, they are taking it out.  I will be able to hug my husband fully.  I won't have to do that butt out maneuver in order not to press against it, in turn hurting him.  I am VERY excited about that.

BUT..... what hit me over dinner preparations had nothing to do with that.  It's what I've avoided thinking about.  He will hear what they see in the CT scan.  This scan will be his new baseline.  This will be what they see as his new normal.  We've done this 3 times already.  The first 2 were fine.  In and out.  Bada bing Bada Boom.  Then that last time.  I think it was in September?  meh.... this fall was all a blur.  SO yeah.  Let's go with September.  I was prepared for the in and out when the doctor walked in and said that there was a tumor.  This one means removal of the voice box.  This one means that you have to have surgery or he will die in a year or so.  This tumor is the one that will leave your family behind if he doesn't do something.  This tumor will cause him to completely check out on his surroundings until he has surgery.  This tumor will leave him hopeless.  This tumor will make his wife crack and yell a cuss word at the doctor.  This tumor will change everything.

Today, I'm forced to stay out of bed and into action.  MD Anderson has called with concerns about his crammed schedule.  I'm forced into cancer planning mode.  They need us there a day earlier now.... yeah.... tomorrow.  They need the scan done Wednesday so that the doctor can see him first thing on Thursday in Katy.  This means that we can get back home sooner on Thursday.  But it means I'm spending another night away from my kiddos.

I'm terrified of this appointment in Katy with the surgeon.  I do not want to go in unsuspecting this time.  I will try to brace myself for anything that she might say.  I am very hopeful!!!!  I really am!!!!  He's been feeling better after this fourth surgery than any of the others.  I just don't want to be blindsided again either.  I'm not sure if I can take another blow.  I guess my way of dealing with things (as I've mentioned before in a previous blog) is to not deal with them at all.  Today, I'm forced to deal with them.  At least peripherally.  I have to find out when the new scan on Wednesday is.  Then adjust kiddos accordingly.  Which means asking my mother in law to adjust hers too.

That's the thing about cancer.  Bryce has cancer.  Now everyone close to him is affected to.  My parents canceled everything to make sure we made the move up here while Bryce was in bed.  Bryce's parents drop everything all of the time to come up here to watch our boys while we go back to Houston for appointments.  My dad took days off work to be up here for our boys for the last surgery, so that Jerrie could be with her son in the hospital.  We all make sacrifices to make sure Bryce is supported during all of this.  And we'd do it all a million times over and over again to make sure of that.

Today, I am on a mission to get everything taken care of for the now day and a half we'll spend in Houston.  I don't want him to die.  That's the bottom line.  I need to get it together for him.  I will continue to try to adopt a healthy lifestyle for myself, for him and for our boys.  I will stop obsessing over my own death.  I'm actually a little bit thankful for the revelation.  Being scared of my own immanent death isn't healthy for anyone.  At least I know now why I'm thinking of these things.  I'm scared of the news we'll get in less than 48 hours.  I'm TERRIFIED!!!!!  As long as I can admit that, then I know how to handle it.

I think it was easier to be mean to myself about my health than it was to think about losing Bryce.  I will grow old with this man.  and 37 isn't old.  neither is 40.  I literally refuse to believe anything else. Big girl panties in place.  Bring it on!

An Affair To Remember

It's been almost a month since I wrote?!  I think about something or something happens and I'd say to myself, "I should blog about that."  But the month of December was a little bit crazy.  The last time I wrote, Bryce was still in the hospital.  He's written though!!!  Catch up with him if you'd like bastobb.blogspot.com

Now the range of emotions that you read about in the last post sums up my December.  We got home.  Bryce has been recovering BEAUTIFULLY!!!!!!!  It's really crazy how well he is doing.  He finally feels good and has been more himself this month than he was before surgery.  He's doing things around the house again.  He finally acts like he feels alive!!!  But that's not to say that there haven't been frustrations through his recovery too.

Then we found out that that Bryce was going to do his follow up appointments in Houston on the 22nd of December.  Whelp.... my family was planning on coming up here for Christmas.  But with the appointments happening the week of, I asked my mom if we could switch it up again and all come to her house.  So she hustled and she bustled and she got it all prepared.  Christmas was wonderful.  That whole week was wonderful.  I went to a Texans game.  We did Christmas with Bryce's family.  Then went to mom's and did Christmas stuff there.  It was all great.

The best part..... AJ's love for the holidays this year.  His love affair with Santa and writing letters to Jolly, our elf on a shelf was one of those sweet moments a mom gets to see in a sons life.  It was right after she came out of the box that he wrote her a note telling her that he liked her so much and was glad that she was our elf.  I mean HOW CUTE IS THAT?!?!!  It was like a lover letter to his elf.  hee heee heeeeeee

Bryce and I can't stand her.  We mostly feel burdened by her neediness and the expectations.  So we call her the troll.  On the other hand, this could be the last year for him to believe in the Santa thing.  I see it all breaking down really soon.  So I made sure I didn't fail this year.  It's typical for me to have a list of excuses in my back pocket for why the troll didn't move.  Not this year.  She actually made snow angels and got into a snow fight with another stuff animal of his.

And even though Bowen asked me last year what the real deal was on the Santa suit, he was still making it lots of fun for AJ.

So the Santa business is over and we've been assembling the boys presents from Christmas every since.  This house is really starting to feel like home!!  We organize and decorate rooms.  We clean stuff out that we never should have moved up here in the first place.  Bryce is finally organizing his man stuff.  He even said that he's starting to feel like he's moved in now.  Honestly.... I think he'd given up on life there for a while.

Maybe the 3rd time wasn't the charm.  Maybe this wasn't the 4th time.  Maybe this 4th surgery was like saying the 3.2 time is the charm.  God has the answers.  I don't.  But I do have faith that we're on the right track.  I do feel like 2014 is a year I want behind me.

Don't get me wrong..... 2014 brought us good things too.  A beautiful new home, a wonderful school for the boys, a neighborhood that the boys can just run around in.  It's also a year that has taught me about forgiveness, true love, faith and endurance.  2014 has showed me areas that I will work on in 2015.  I have already stated that the resolution for myself is to let it go.  I'll channel my inner Queen Elsa.  Stop being the ice queen and just live life loving the best way I know how.

I'm reading "Traveling Mercies: Some thoughts on faith" by Anne Lamott.  It's funny and clever and honest.  It comes highly recommended from my friend Courtney and I think you should read it too.  The other night I read the following and the light bulb went off.  "...God is for giving, and we are here for giving too, and that to withhold love or blessings is to be completely delusional......Then an old friend from Texas left a message on my answering machine that said, 'Don't forget, God love us exactly the way we are, and God loves us too much to let us stay like this.'"

and THAT folks is when it hit me.  I don't have to stay like this.  I don't have to hold on to grudges.  I don't have to wonder why people do bad things to me.  I don't have to let it consume me.  I can forgive them.  I can let it go.  Life is too short to let my heart be filled with the bad stuff.  If I let it go, I can fully appreciate so many little things that might have gone by unnoticed this month.  FINALLY meeting my newest nephew.  AJ's crush-like love for his elf.  Enjoying time spent time with my parents that I miss VERY much, instead of being sad that they aren't right next to me anymore.  Rejoicing for the successes in Bryce's latest surgery, instead of resenting that he had to have it.  Just let it go!

I still have a lot of work to do on myself.  I literally just locked myself in my room to avoid these kids that I love so much.  But..... today is still 2014.  I'll be better tomorrow.
Happy New Year everybody!!!!  be safe!!!!

Pollyanna V. Disney's Divas of Darkness

If Disney were to come up with a movie about Bryce's cancer, I'm not sure how I would be portrayed.  On most days, I'm fine.  I see the bright side of things.  I make jokes about Polly Sunshining my way through his cancer struggle.  I know it's his body that has cancer, but the caregiver deals with plenty too.  The past couple of weeks have been rough on us as a couple.  Today was rough on me as a caregiver.

My inner Pollyanna got up and left the room.  In her wake, the Disney Divas walked in.  I couldn't quite decide if it was Ursela, Maleficent or Lady Tremaine that took over or if it was the best and worst of all three.

I'd say "poor Bryce", but the divas are still lurking inside.  And you know what?!  Maybe that's OK!

He got really mad today.  He had EVERY right to be!!!!  To learn more about that, please see this.

There is a really fine line between being your husbands sounding board and their punching bag (not literally.... this is quite the opposite of a Ray Rice situation).  And this morning, I had dealt with enough of the wrong side of that line.  I literally walked out of his room with no explanation or words.  I just walked out.  I wasn't proud of myself, but I did it.

Then I decided that it's ok.  I left him in a nurses hands.  They're professionally prepared to deal with the angry patients of the world.  I, however, am not emotionally prepared to deal with an angry husband that happens to be a patient too.  That's the key to it all, right?  If I emotionally disconnect to be the caregiver, then I'm no longer working on my relationship as a wife.  If I concentrate only on being a wife and forget the needs he will have from a caregiver, then he will become beyond frustrated with me then, too.

I have researched a few things this evening.  I decided that Google needed to lead me to God who needed to lead me to some instruction on wifely things.  You know how the self can have a conversation with.... well, its self.

Pollyanna: I need to read Proverbs 31 again.

Maleficent:  Wasn't that a dream that some MAN had?!  It's a completely unrealistic idea for some woman to behave like that!  Seriously.... it's a DREAM!!!!

Good Angel:  You sure about that?  What do you really know about 31 besides some of the words?

Lady Tremaine:  You SHUSH!

It went on like this for a while, but I'll spare you the conversations entirety.  What I do know is, in that moment, I needed some Jesus.  This is what I knew I remembered about Proverbs 31.  I knew that I wasn't presenting myself like a precious jewel.  I didn't care about wool or flax and I could have sunk the merchant ships with my tears of anger, spite and self pity.  Here's what Google needed to remind me of:  The heart of her husband trusts in her.... She does him good, and not harm, all the days of her life.

Luckily, I got it together and I can chalk today up to another day of our life that I didn't cause him harm.  I feel like that does him good.  And I feel like he can trust me.

In all seriousness, we both got it together.  It's ok to walk away if he's in safe hands.  I need to take some breathers too.  The outcome he was looking for was found and we actually fought for that together.  It wasn't a pretty battle.  For him, for me or for the nurses.  Ultimately, Pollyanna walked back in the room.  She's not all smiles yet, but she's here again.

sorta like this......

SO IMPRESSED!!!!!!

Have I ever told you that Bryce is the strongest man I've ever met?  No?  oh.
So my husband is the strongest man I've ever met.  I'm BEYOND impressed with him.  I've seen him a couple of times since surgery.  I'm waiting on them to assign him to a room.  But I couldn't believe how great he looks.

He can't talk.  His sister and brother bought him a white board to help with communication.  This was one of his messages to me:  I am so optimistic!  I feel so relieved and happy for it to be finished for now!

Ya know why?!?!?!?!  Because he has SO many prayer warriors.  THAT'S WHY!!!!!  GOD did this!
 He feels SO good right now.  His pain is under control.  He has a white board for communication.  He smiles at everyone he's seen so far.  He's thanking everyone and sharing the love!

God is good!!!!  I knew that he could pull us through this.  He is working on Bryce to heal him physically, to keep him calm emotionally and mentally.  I am so grateful.  I am so happy.

PRAY! FIGHT! WIN!

The things we do for love

We've had a rough couple of weeks.  As if life isn't enough, cancer happens too.  I've always thought marriage was such a weird thing.  God wants us to get married & have babies & live happily ever after.  Or wait...... maybe that was Disney.  But God likes it when we get married too.  It's just SOOOOO hard sometimes.  Don't get me wrong.  I love my husband.  But there are times when I just can't understand why I can't just walk out when he does something stupid.  I know that he's wished he could bail on me too.  Throw cancer into the mix and things can flip your entire world upside down.

It's that fight or flight response.  We all have it.  And I can't pretend to imagine what happens in his head right now.  I'm not battling cancer.  But what I do know is that we both made the decision to stick around and fight.  That's what married people do.  We love each other & love each other through the tough stuff.  When his flight response kicked in because he didn't want to think about his reality, I made the decision to fight for him.  For us.  For our family.  And he's done the same for me.  I check out & he pulls me back in.

Well, I personally invited him to stay in our reality while we celebrated holidays.  This Thanksgiving we entertained the Stobb's at our house.  It was wonderful.  The San Francisco branch made it in time to enjoy the beautiful bird that  Bryce deboned, stuffed & rolled.  There were so many delicious things to eat.  It was a WONDERFUL day.  We also got to celebrate AJ's 8th birthday.  I can't believe my baby is EIGHT!!!!

Then we find ourselves staring at each other this morning.  I was actually the one that couldn't get my emotions in check.  I didn't like how many sticks it took to get the IV in.  I wish I could just stay at his side through the whole surgery.  I wish that I could hold his hand all day.  I wish that I could take away his cancer.  I wish a lot of things.  But I know that I told him how much I love him.  I know that he's in good hands in that OR.  He's been prayed for like crazy lately.  And his surgeon has been prayed for too.

I know I'm in for a long day.  I'll try to get some sleep here and there.  I just wanted to post and say hi to people.  I hope all of your holidays were as great as ours.  And here's my PSA for the day:

Love each other.  Love with everything you have.  Fight for the ones you love and what you believe in.  Because sometimes..... they might just need to hear it.

For Bryce updates:  bastobb.blogspot.com