Dark Days

I'm going to write this.  Not because I want pity.  Not because I need anyone to feel sorry for me.  This one is going to be a version of therapy.  Even though we are getting therapy, I'm still losing my mind.

You know what sucks about cancer?  It's a destroyer.  Not just on a cellular level.  Because killing a person from the inside out, cell by cell, isn't enough for cancer.  Nope.  It's takes a hold of things outside of cells too.  It sneaks into your mind and emotions.  Through said mind and emotions, it slowly works on decaying your faith, your hope, your relationships.  Your ability to handle everyday things is shot.  A normal conversation about a child's Christmas party turns into something ugly.  Cancer is eating at my husbands cells and is destroying the emotional capacity to handle life.

We both go see what we call our Cancer Counselor.  She is awesome.  We love her very much.  She's down to earth and matter of fact with us.  She speaks to us in a way that we can relate to and understand.  We are able to take away lessons from our sessions with her.

The kids have gone to a place called Wonders and Worries.  They're FANTASTIC.  But, they need more.  We know that.  And we'll get them in with our Cancer Counselor pretty soon for individual sessions as soon as we can figure our lives out.

More recently, Bryce and I discussed the possibility of anxiety meds for me.  It's hard to be productive when you wake up with your chest pounding a couple of times a night, a couple of days in a row, or a couple of days in a week.  Therefore, I'm now seeing a psychiatrist.  I call her my crazy doctor.  She's not crazy.  She's just helping me to not be.  Nearly 4 years of dealing cancer without the assistance of something from a bottle came to an end for me.  I'm now taking "chill pills."

Our church and framily.  These people that surround us by blood or the blood of Christ bring more sanity to our insane situation than we deserve.  I know why we are in Lago now.  It's to be raising our boys in this community of people that love unconditionally.  There is not a single thing I can do to ever fully thank all of these people for what they have brought into our lives.

All of that is to say that there are resources and we are going and using them.  Yesterday at a med check appointment with my crazy doctor, she told me that she is validating my selfishness.  It's OK to feel and be selfish sometimes.  It's the feeling guilty about it that I need to let go of.  Hey.... I was raised southern Baptist.  We know all about guilt.  She also told me to see the goodness in things that might be annoying me.  Ex)  I have to go to the grocery store after I've been at work all day.  Think of it as my mental break.  I get to walk around the store with out co-workers or kids asking anything of me.

Even with all of the resources in the world.  Even with the countless amount of supporters, friends, kind words, prayers and offers to help us.  Even with all of that, I will have dark days.  I had a breaking point last weekend.  I spent Sunday in tears.  I guess I needed that to brace for the impact of the biopsy results on Wednesday.  When I heard that he had cancer, I was at work.  It honestly didn't even register as a speed bump at that moment.  And this week was already happening..... Christmas parties, making dishes, bringing gift exchanges for kids, attending programs, packing bags, wrapping presents.  It's not anything that everyone isn't dealing with.  All of those things are happening to everyone in town right now.  My life isn't any different that anyone else's.  I go to work.  I have the luxury of my husband being at home to handle all of the kid stuff.  Except that husband has cancer.  that's not a luxury.

That husband is currently terrified to be around large groups of people.  That husband is so afraid that the worst is just around the corner.  That husband cried with his young boys while he explained what to do should they find him dead or unconscious.  That husband is doing everything he can to hold it together.  That husband is mine.  That husband is my rock.  That husband is the one that picked up the pieces of me this weekend and told me to get in the shower.  That husband doesn't deserve this.

He also doesn't deserve to get yelled at by his crazy wife.  I was a total $h!+ storm this morning.  I will admit it.  I'll also admit that I'm a thrower.  When I'm angry, I might throw something.  He's only seen it twice in our relationship.  And only after cancer happened.   So to be fair, cancer started it.
I'll also admit that I didn't have anything to throw this morning in the middle of my $h!+ storm.  There's now a hole in the wall near my sink.  I'm not proud.  And once again, my husband picked up the pieces.  We've hit a place where we're both terrified.  We can hold each other and just cry.

Bryce, I'm sorry for acting like a complete fool this morning.  But like my crazy doctor told me yesterday...... find the good in things.  We shared a special hug this morning.  So many married couples wouldn't have made it through the things we have.  I held you and cried with you this morning because I love you so much it hurts sometimes.  And just in case my crazy doctor's words don't hit home..... in the words of April from Hot Tub Time Machine, "You have to embrace the chaos.  You have to; that way, life might just astonish you."

Confirmation

This is going to be another quick one.  I'm at work, and this is the easiest way to tell everyone.  It also helps me to to NOT talk about cancer ALL of the time with every single person we know.  It feels like that is all I ever talk about anymore.  If I tell you all here, then maybe we can talk about anything else when I see you face to face.

So the results are in.  Cancer is back.  Same stuff..... squamous cell carcinoma.  It's in his neck.  Although the area that was infection turned out to be not cancer busting out of Bryce, it is very near that.  We have actually been able to watch this thing grow lately.  We both knew that's what it was.  As hopeful as I was for it all to be just an awful infection, it became painfully obvious over the past week that it wouldn't be the case.

Next steps:  He is currently sitting at Dr. Y's office in Austin getting an EKG, blood work, etc done and meeting with the researchers to start the trail up here.  Pray this stuff works because I'm tired.  And as tired as I am of cancer, it's even worse for him.

We'll have more news soon, but that's what's going on.

Updates in the Great Stobbma Drama of Winter 2015

Bryce is a neck breather.  He has a hole in his neck where he breathes.  That hole is called a stoma.  Bryce has taken to calling it his Stobbma.

Another quick update because I am at work, but I've had many, many inquiries as to how Bryce is doing.  Sorry for not updating, there just wasn't much to say until Sunday.  Then, we knew he had an appointment with Dr. Y here in Austin today.

Back to the really, really bad infection.  We knew it was there and they ramped up his antibiotics to something stronger last Wednesday.  Bryce slept a LOT last week.  He just didn't feel good.  There wasn't much improvement last week in this thing either.  For a man that can't feel his neck, he was actually in pain.  Things in his chest and shoulder from front to back hurt.  What little bit of his left collar bone is left hurt him to touch it.  He's been emailing daily updates to Dr. P in Houston with gross pictures and all.  Friday his email asked "What do I need to look for that will send me to a hospital?"  It's been kinda scary, to say the least.

Then when he was....  uhmmmm... let's see if I can keep this clean and not gross....  He woke up in the middle of the night after going to bed Friday night and was clearing out some of the infection.  When that happened, he noticed that one of the metal pins/markers came out of this wound.  Makes me wonder if that's what caused this infection all along.  After that came out, this thing started to look better.  Sunday morning, he turned a corner and started to feel better than he had in a week.

Today, he went to see Dr. Y and the results of the culture show staph.  So now we know that much.  While he was there, he started the process of signing up for the clinical trial that Dr. Y will have going.  I don't know much about that yet and I'm sure I'll find out soon.  Right after he was done there, MD Anderson called me to say that they've scheduled the CT guided biopsy for Friday.  He'll have to go down for evaluation Thursday and he will get the biopsy Friday.

I do not know when he'll get the results of that.  We will certainly let everyone know.  In the meantime.....

Be faithful in hope, patient in affliction, faithful in prayer ~Romans 12:12
PRAY! FIGHT!! WIN!!!

I'll take infection for $1000, Alex!

This is going to be blunt, but a LOT has been happening since we learned about a spot on a CT scan 2 weeks ago.

Because they see this thing on a CT scan, they have to confirm that it's cancer cells with a biopsy.  He had an appointment last Wednesday for an ultrasound guided biopsy.  Since we were already going to be in Houston for Thanksgiving the next day, we all loaded up and went to his appointment on the way to my moms house.  We were there for 2 hours, but they never were able to see anything with the ultrasound.  Therefore, no biopsy.  They weren't going to blinded gab a needle into his neck to find a small grape sized tumor that is centimeters away from his carotid artery.

As we were leaving, I looked at Bryce and said "I'm not allowed to get excited about this, am I..... "
He said "No, but it does feel good, huh?"

And it did.  Then, we went to my aunt's house for Thanksgiving.  Saw friends the next day.  Spending time with friends and family felt really good.  But Bryce wasn't himself.  Just laid around a bunch.  We came home Saturday.  Sunday was fine.  Monday, he said that he felt really crummy and had a fever.  He was basically useless all day.  He tried to sleep it off, but he just couldn't shake it.  He fell asleep on the couch, but woke me up at 1:30 in the morning.  TERRIFIED.  He thinks that cancer is breaking the surface near his stoma.  For someone that is a neck breather, having an open wound right next to the area where you breathe is a very scary thing.

I get up with him.  This thing is gross.  I will save you all of the gory details, but believe me when I say Guh-ROSS!  I take pictures and send them to his surgeon and her PA.  Then we try to go back to sleep.  It took a couple of hours, but we managed.  We get the reply from Dr. P and she says what we're scared of.  She thinks that cancer is busting at the seams.  So we got the kids to school and headed for MD Anderson in Houston while her PA was working on getting us appointments.  By the time we got there, things were set.

1:00 - Wound Care - We learned how to keep this thing clean and whatever.  But she tells us what we already knew.  There is infection.  She packs us up some supplies and sends us on our way.
3:00 - Dr. P - She again says that she's afraid that this is cancer coming out of his neck.  She takes a biopsy of the area since we couldn't get one with an ultrasound.  Writes a prescription for antibiotics and pain medicine.  Tells Bryce to start chemo STAT and find a trail to get on ASAP.

We came home kind of in the dumps.  I got the script filled for stuff and he started it that night (Tuesday).  Yesterday, he woke up with this thing looking WAYYYYYYYY less angry.  After just 1 antibiotic.  So I got to thinking.  What if all of this is just an infection.  So I started praying for this specifically.  Then I got to thinking a little more.  Can a really, REALLY bad infection look like a tumor on a CT scan?  So I started praying really, REALLY hard for that.

Yesterday, we get the email from Dr. P that the biopsy shows only inflammation.  Prayer Request #1 has been answered.  It doesn't appear to be cancer crawling out of his body.  So, that's kind of where we are today.  We've emailed her 2 pictures of this nasty thing each morning; yesterday and today.  There hasn't been much change in this thing from yesterday to today.  But it is way better than when it appeared out of nowhere in the middle of the night.  She is going to put him on a stronger antibiotic.  That was called in this morning.  She has told us to hold off on chemo.  Bryce will see his oncologist here in Austin tomorrow morning.  Dr. P is going to call him today to order a culture of this thing.  Meanwhile, she's trying to figure out how to get a biopsy of this spot underneath.

So, here's what I'm praying SOOOOO hard for.  What if..... just WHAT IF..... the spot they see in the CT scan is infection?  What if his cancer isn't there at all?  I can honestly say that I've never prayed for an infection before, but I'm doing it this week.

****Please excuse any typos.  I have thrown this all down with no proof reading so that I can get back to work.****

Cuss Words and Throw Up

Cuss words and throw up basically sum up what's been happening for the last 72 hours.

Bryce had scans yesterday.  Today was results day,  For the first time since he started this journey, I didn't go with him to the results appointment.  That is where a lot of my anxiety stemmed from yesterday.  Today, I boldly went into work with the promise that Bryce would video me in via Google Hangouts.  He did as promised.

I wish I could say that he got another few weeks of reprieve, but that isn't the case.  Six weeks ago we went to  Houston for scans.  Actually..... let me back up to his surgery in May.

In May, they did the major surgery that removed the bone that housed the last tumor.  They removed the top portion of his sternum, some of his collar bones and the first couple of ribs that connected to the portion of the sternum that they removed.  When he came out of surgery, we knew that there were two spots on his trachea that showed cancer.  The cancerous cells were marked with little metal pins so that they could watch them and look closely at his scans.  They were microscopic cells.  Cancer has to be a certain size to show up in a CT scan.  These two spots were so small, they did not show up in his pre-surgical scans.  But we knew that they were there.

He healed up and did GREAT!  He has felt better after this surgery than he has in well over a year.  The first scan was clear.  We went on our amazing road trip of a lifetime.  Then he had the scan six weeks ago that had that place that looked a little fishy that was near one of the markers put in during surgery.  So, there was that.  Then, the scan yesterday.  Today was results day.

So we're back in reality.  The fun vacations are done.  I'm at work while he's at the doctor.  Cancer is happening again.  The fishy spot has turned into a grape.  For all of my throwing up yesterday, and cuss words for... OK.... all of the time..... but none of the throwing up or cuss words got him different results.  It's back.  It sucks.  We weren't blindsided, but it still sucks.

Here are the questions we get a lot of:

• What's the prognosis?
• Our doctors don't really give us that anymore.  He's been terminal for a year and a half. They also told him over a year ago that he could be dead by now.  Here's the deal...... We pray.  God has got this.  He's got Bryce.  He's got me.  He's got the boys.
• Radiation or Surgery?
• Radiation will probably cause his heart to explode because his sternum is missing, but his surgeon will talk to his radiation oncologist (Dr. Cronowski).  The surgeon doesn't feel comfortable with surgery because he has that other marker that could grow AND this is kinda too close to the carotid,  They aren't into allluh THAT.
• Next Steps:
• She's looking into STUFF.  However, we've stayed in touch with his oncologist that is here in Austin at Texas Oncology (Dr. Yorio) that has administered the chemo the last two times up here.  This guy's running a clinical trial that has just started that is specific to Bryce's cancer.  Bryce will go see him on Monday.  Meanwhile, Dr. P will talk to Dr. Y & Dr. Jasani (medical oncologist at MD) to see if this is the best way to go.
• So, there's Monday.  That's been covered.
• He also has to "confirm" that he has cancer with a biopsy.  MD is working on getting him an appointment on Wednesday for that.

Basically, things are in motion.  They've been in constant motion.  It's not that we always expect the worst, but we are starting to get used to how it all works.  And trust me..... we're both over it.  And we continue to pray.  Prayer has been key this week.  We invited Pastor Mike and his wife, Rhonda, over here to pray with us.  We had a really good time talking about LOTS of things.  This was also a chance for us to get to know them.

*Don't worry: I told them that I come with a disclaimer*

And here's the deal: we keep praying.  Bryce needed measurable disease to qualify for this chemo.  Now he has it.  Now we pray that it works.  God has big plans for the Stobb family.  Just you wait and see,.....

You'll see..... you'll all see.....

Community

I haven't written in a very long time.  No news is good news, right?  And that's been pretty true for us.  Bryce feels better than he has in a couple of years.  And we've been so busy with me going back to work and him being our stay at home, I just haven't had time.  But honestly, that's not what this is about today.

Today, I want to talk about our community here in Lago Vista.  A year ago when Bryce got the news about only having a year left, he started thinking a lot about the things he wanted to see and do before his time ended.  Then in the Spring, we knew there would be another surgery and that's when the Go Fund Me page was sent out.  He wrote beautifully about our "situation."  One of the things he wanted to see was Bowen playing in a football game.  One of the coaches of the little league team here saw the Go Fund Me and went to the board to get Bowen on the team.  It was an amazing gesture.  So kind.  From people that didn't even know us.  THAT is what Lago Vista does.

Today, I am amazed by the love and support of this community again.  Bowen's football team played in the Super Bowl.  They made it to the championship.  Our team is comprised of 5th and 6th graders.  The opposing team had a giant that had been held back.  Our 10 to 12 year olds played against a one man show today.  He's 13 and I have no idea how he made the weight requirement.  As angry and nervous as it made me as a mother to let him play this kid, it became another mothers worst nightmare today.

Bowen was the 2nd big hit for the giant.  Bowen was knocked so hard, he flew back a couple of yards and the back of his head slammed into the ground.  I watched the color drain from my baby's face.  I couldn't stand it anymore and I went out to the field to talk to him on the sidelines.  Crying, shaking and dealing with a horrible head ache.  But he was on the side lines and the game just got worse.  It got MUCH worse for another mother.  One of our biggest, strongest, fastest kids was hit cruelly out of bounds by the same monster.

Watching him try to get up twice and go back down was awful... just awful.  Seeing this boys mother knelling at his side while our coaches held the boys dad back from getting to the other side was ripping my heart out.  I know how he felt.  I have never wanted to physically injure a 13 year old as badly as I wanted it today.  I wanted to join forces with this dad and get my hands on someone.  ANYONE.  That kid. His parents.  The other coaches that allowed it.  ANY.ONE.  Watching this boy back boarded and sent to the hospital in an ambulance was terrible to see.  I wanted someone else on the other side to feel hurt and pain too.  Is that the Christian thing to do?  No.... I'm only human.  I tried to get over anger by focusing on praying for our teammate and just hugging Bowen while he cried because of his own head.

All of this is to say how amazing this community is.  Our coaches wanted this monster out of the game.  The other coaches said their giant wouldn't play defense anymore.  Our coaches said that it wasn't worth it.  NO trophy is worth what our boys were dealing with.  Luckily, our teammate is ok.  Checked out in the ER with a closed head injury and no spinal injuries. PRAISE GOD!!!!!

Our boys were crying.  Scared for their friend or in physical pain themselves.  Bowen is fine.  Other players are fine.  We didn't win a trophy.  What we DID win was a real sense of community today.  The people here in Lago were amazing.  People from our church that weren't there and were an hour and a half away already knew about things.  They were texting to find out how Bowen was.  I knew that he was fine.  I knew that the prayers were really needed for the boy headed to the ER.  Prayers were lifted up and God delivered this boy safely at home.

Our coaches taught us today and showed the boys by example that winning a trophy "at all costs" isn't the real way to win.  This community has taught us about love.  They have no reason to love us the way they do, but they do.  And it's a true gift.  Anyone that lives here and is a part of this has been a gift to us.  This community loves.  When when we're filled with anger at someone else, they rally together and love each other.  They go to the hospital to visit their teammate to make sure he's ok.

The community here in Lago Vista is unmatched and very much appreciated.
Thank you for letting us in Lago :)

P.S.  Bowen is fine.  My prayers continue for our #82 that was sent to the ER.  I know you're headed home.  I couldn't be happier.  Get well soon, buddy & TAKE IT EASY!!!!!!!

#BStrong Gear

Many have expressed interest in where to get #BStrong gear.  I will start taking orders and payment now through August 31st.  I'll get the order in the first week of September and should have the product delivered mid-September.

Stobb Family in BStrong t-shirts

Products Available:

Unisex T-Shirts: S-XXL...............$15

Women's Tank Tops: S-XXXL......$15

Koozies........................................$5

11oz Ceramic Coffee Mug.............$8

Both of the shirts and the koozies will be the same #BStrong blue.  The coffee mugs will be white with a blue logo on them.

I have PayPal & can send you requests for payment & receipts that way or accept cash, of course.  All I need is an email address for me to send the request from PayPal.

Pass the word along to anyone you know that follows along and has mentioned wanting some #BStrong stuff!!!!  Commenting on this will work.  However, the best way to send me what you want is by email at jmstobb@gmail.com

Love to you all and KEEP THOSE PRAYERS COMING IN!!!!!!!!!!!!

RESULTS TOMORROW!!!!!

Vacation Ends & Reality Begins

Hello to everyone out there.  If you are facebook friends with myself or the hubz, then you may have seen a picture or two along our epic journey.  It was seriously the road trip of a lifetime.  Stobb Family Tour had many ups and downs.  OK.... me breaking my ankle was the down of the trip and was sort of a game changer.  However, I didn't want to let it stop us from seeing some really, REALLY cool stuff.  My favorite was the entire sate of Idaho & Oregon.  Also Crater Lake, which happens to be in Oregon.

Crater Lake

When we left our home, we knew we wanted to see some people that we rarely get to see.  We had a couple of items on our list:  Dinosaur National Monument, Yellowstone, Giant Redwoods, etc.  What we encountered was SOooooooo much more.  Our plan was to not have a plan.  We'd wake up & decide where we were headed for the day.  Stay off the main highways and run into all the beauty that we possible can.  I feel like that was a success.  We also didn't necessarily mean for it to be a National Park vacation, but the first place we stopped was Capulin Volcano.  Bryce talked to the guy in the visitor center about his disability status.  As a result, he is able to get into National Parks for free.  AJ was REALLY into getting Jr. Ranger badges /patches at each of the parks we went to.  So, it became a thing.  And it was GREAT!!!!!!  Hopefully, Bryce and I will sit down and discuss each route and road we took.  Because I HIGHLY recommend it!  And 2 days after walking in the door, I left with the boys and headed for Houston to visit friends and my parents.

Now..... it was an AWESOME vacation.  We saw amazing things!  But truth be told, we were ready to come home.  It was time.  And even though I longed for home, I'd love to ride that high forever. Thank goodness for memories.  However, reality is starting to settle in again.  Bryce and I are reversing roles in the house again.  And because of the broken ankle, it's happening NOW.  He's cooking.  He's cleaning.  I'm looking for a job.  My job today (& everyday) is to FIND A JOB!!!!  It already feels weird.  I am sitting at the computer applying, updating and uploading while they scurry around me.  This does give me the chance to stay off of the ankle also, but it does feel weird.  I've even received my first rejection email!!!!  I'm on FIRE!!!!!!

The other thing that I'm really struggling with is my own mindset.  Bryce and I go to a counselor who helps us through this cancer stuff.  She's been able to identify for us that living with no stability is hard.  Cancer patients and their families have nothing they can rely on.  Bryce struggles with staying positive, hopeful & fighting for his life, while also preparing for the worst.  We both have thoughts like "is this the last time he sees this person."  He occasionally has thoughts like "is this the last 1st day of school I'm going to be here for."  Bowen is getting to play football this season because Bryce wants to make sure that he gets to watch him at least once.

YES..... we stay positive and fight for him live.
#BStrong
#PrayFightWin
Yes we live life to the fullest.  However, those thoughts do creep in every now and then.

This week, Bowen has started football practice and I will be signing AJ up for martial arts today.  I'm going to log on and search for jobs. The boys are supposed to be cleaning their rooms.  Actually, Bowen's is done.  AJ's will hopefully be clean(ish) by Christmas.  I'm going to try to get out and go swimming a little bit with them.  Unless I get on with a school district, it's my last summer with them.  That's starting to sink in.  But I am trying to stay positive.  I HAVE TO #BSTRONG!!!!

Next week, Bryce gets his next scan,  We'll go to Houston Wednesday night for early morning scans on Thursday.  Then Friday afternoon, Dr. P will give us the news.  We know he has the 2 spots on his trachea.  We just pray that they are dying cells and NOT GROWING!  Everything is up in the air until we talk to her.  Then once we do, we either have a get a plan or we get another 2 months of peace.

Until then........ we just will enjoy this summer.  We made memories that will last us forever.  Looking for our specific prayer requests?
For cancer to just GO AWAY!!!
For me to find a job
For mental and emotional states to remain calm

Love to you all!!!!!

Stobb Family Tour

Hello Friends & Family!  I bet you thought you were lucky enough to not see a blog from us.... not so much!  I'm going to start writing LOTS!
"WHY?!" you ask.  Because we doing super cool stuff & I would like it to be out there for the world to see!

But first, I'll send updates on Bryce.  One of the reasons we haven't blogged lately is because we didn't want to think about the pathology results.  A-N-D we still haven't told the boys.  During surgery there were 2 questionable spots on his trachea.  Whelp, it's officially cancer.  Both are so small that they did not show up on the pre-surgery CT scan.
1)  We pray it's already dead from chemo.
2)  We pray it can't grow through scar tissue.
3)  Pray.  Fight.  Win.

So yeah.... that wasn't what either of us wanted to hear.  But it is what it is.  He will have another scan in August.  We'll work around to talking to our boys about it this month.

In the meantime, we're on an epic roadtrip!  Bryce is officially going on disability.  I'll be the one bringing home the bacon soon enough.  But while we're both jobless, we're going to make some memories & have some fun.
We left this morning and we'll be back August 1st.  I stopped in Lubbock to see Texas Tech.  And we're continuing on to Dalhart where we're sleeping tonight.  It's a lot of miles on day 1, but there won't be too many days like this.

Overall, we're headed to Colorado, Yellowstone, Washington.  Then down the west coast and back to Texas.  Lots of pictures & tidbits are going to be happening while we're on our tour of the wild west!

But for today, we never made it out of our big, beautiful home state.

Post more soon!  Love to you all & thanks to everyone for the love & support you've given us!

P.S.  I did this on my phone & I've been fighting off a migraine all day.  I'm really trying to keep it together & I think I've done ok, but the typing might be off.

Therapy for Cancer

It doesn't matter that Bryce has had cancer for three and a half years.  It doesn't matter that we feel like seasoned vets at the time of surgery.  At some point, you start to crack.  Whelp, cracking has been happening all week.  I've been running around with my crazy hanging out and can't seem to get it tucked back in.  Bryce's brother, David, flew in on Monday to help us.  I had no idea what I needed help with until he was here.  THEN he was put to serious work.  Helped run boys around while we had appointments here and there.  Cooked us dinner while we were running around.  My wonderful sister-in-law, Ginny, sent him happily and told me to make to-do lists for him.  A-N-D it's their anniversary today.

Poor David got to see how nuts I really can be.  I had a very hard time keeping it together.  Bryce and I have the boys at a wonderful place called Wonders and Worries to counsel the boys through this process.  It is great for them AND free!!!!!  While we met with her the first time, she asked "What about you guys?"  We told her we were overdue.  She set us up with a counselor of our own that is paid for through Flatwater Foundation.  The boys have gone 3 times and we have gone 3 times.  We checked in Wednesday.  I feel like we did some real work too.  Here's what I got out of that:

I can't plan or schedule or control cancer.  It's pointless to try.  

Novel concept, eh?

I've been driving myself and everyone else around me absolutely nuts.  I've been awful.  Turns out, I can't control everything.  I should, in fact, learn how to be flexible.  *sigh*  So that's been the new goal.  Mission: Be Flexible

Early in the week, I just thought that I was a seasoned vet at this hospital stay stuff and I know EXACTLY what I need.  Then I'd find myself thinking THE dumbest stuff.

Ex.)  I get embarrassed when I have to use the facilities (if ya know what I mean) in his hospital room.  As soon as I'm finished, inevitably, his team of people walk in.  Solution:  Pack my scentsy room spray.  I thought I was a genius for thinking of bringing this stuff.  N

Farting Unicorn Sock Club: Dr. P, PA Monica & me

ow I'm mostly embarrassed that this is really what I was thinking of when I just needed to relax.

Here's the good news.  We all made it out alright.  Bryce is officially finished with his surgery and I'm waiting for him to wake up so they'll let me see him.  The surgery went about like they said it would.  There will be more news about that.  Knowing that I have so many people that have pitched in to help take care of us is awesome.  I am SOOOOO grateful.  Lastly, I wanted to add what I wrote on Bryce's blog earlier, just in case that was missed.

I'm putting on my most polite voice possible.  I LOVE that we are loved and supported.  I know that many people want to see him to show us love support.  Here are my requests though.  It will be our immediate families only through Sunday.  I'm sorry.  We have a big family and I will be trying to figure out when he likes to nap.  I want him getting rest.  LOTS of rest.  My second request is that visits are scheduled by myself.  Please text me and we will get you up here.  As much as we'd LOVE to throw a party and lift up my guy with praises and prayers, the rooms aren't very big.  And he needs to sneak in some naps during the day.  Again, I can't put into words how awestruck and moved we are by the well wishes, thoughts, love and prayers.  And having to put restrictions on people showing us some love feels very weird.  But it's best for him.  And the nurses.  The nurses get annoyed when we start getting rowdy and crowded in their work space :)  There's a part of me that delights in that.

I'm signing off and I doubt I'll be very available until I can get us tucked into our room.  I'm anxiously waiting to see my husband.  I want to kiss him.  I want him to be done with this stuff.  I Want cancer to go away.  I want all of these things.  I won't schedule them.  I'm going to try to be flexible.  

The Fear and Loathing

I haven't written in forever.  I think there are a couple of reasons for that.  We've been incredibly busy.  Baseball, chemo appointments, kidney stones and pulling a few shifts at the local coffee shop can eat away at your spare time.  But today, especially this morning, I've got nothing.  Bryce and I drove into Houston last night for some pre-op appointments.  This morning, I'm sitting in a room while he gets tests and scans run for a couple of hours.

Another reason I haven't written:  Anger.
And it's ugly.

I've said through this whole journey that I'm not angry.  I'd like to be, but I have no one to blame.  I don't have anything to be angry AT.  I've also said that anger is a masked emotion.  Anger is actually covering up another emotion.  It's easier to be angry than to show sadness, weakness, or in my case, fear.

Bryce and I don't like to think about the surgery that he's about to go through.  But I do know that over the past few months, I've become an angry person.  With each new recurrence, it gets worse.  I don't wear anger well.  I can blame it on lots of things.  In reality, I'm angry because I'm terrified.  I hate cancer.  I hate what it is doing to Bryce.  And in turn, what it's doing to me.

I want to blame cancer for everything now.  Cancer made me depressed.  Cancer made me fat.  Cancer made me angry.  No.  PISSED OFF!!!!!  But what it's really done is make me scared.  It makes me question too many decisions that Bryce and I have to make.  The conversations that we have are things that scare me so much that I want to throw up.

Then there's the part we're dealing with today.  Today he's getting all of his scans.  No big deal, right?
But tomorrow we get to hear the results.  Has the chemo worked?  Is there any shrinkage in the tumor?  Did it grow?  or worse......  Is there cancer anywhere else?  I LOATHE waiting to hear that part.  It's less than 24 hours away and I already can't stand that I have to wait that long.

But that's where we are.  The fear and loathing of cancer.

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!