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!