The Final Hours

DISCLAIMER:  I ask that you not tell all of the gory details to your kids.  Mine don't know EVERYTHING!  They know what they need to.  I'd prefer that some of this isn't told to them by a friend at school because they assume that my boys already know.  They know A LOT.  Way more than a 9 and 11 year old should have to.  I just ask that you keep it to yourselves.  So, here it goes.....

Bryce had a way about him that drew you in.  You wanted him to laugh at your jokes.  You wanted to hear what he had to say.  And when he wrote, you were right there with him.  I know that I hung on every word he said in this forum.  I'm going to write the last post in hopes that it's only half as good as he would have done.

This blog of his was meant for him to be able to get the news out there to our friends and family.  It was meant to chronicle what he was feeling physically, emotionally, mentally, etc.  Somewhat of a reference for him to look back on if he had to do any of it over again; and he certainly did.  It was a wonderful combination of  Bryce and the medical reality we heard at the doctors offices.  He conveyed everything so well here, because he didn't really like to talk about it face to face.  And last, but not least, it was for his boys.  He wanted them to know that he tried.  He wanted them to be able to see one day that Daddy did everything he could and never gave up.

With that said, I feel like I owe it to Bryce, Bowen and AJ to put down what actually happened.  and I need to do it before I start forgetting.  Saturday was the 3 month anniversary of his final flight.

Many of you may have seen my blog post that said "I don't want to talk about it."  Bryce had an appointment that day to go over the results of his latest scan.  I had been at work that morning.  As you all know, Bryce was under 24 hour surveillance.  His parents came over to be with him all day while I was at work.  His mom drove him to the doctor's office for the results and I met them there.  It was, of course, not the news we wanted.  The tumor had grown and they were taking him off of the trial.  I started yapping about the next steps.  The next clinical trial out there.  The next hit of chemo he could get while he was being qualified for the next trial.  We were all crying a little bit, but what scared me the most was the look on Bryce's face.  He was done.  He would continue to fight.  I know that he wasn't giving up.  He was just so tired of having to make these decisions.

They went home and I went back to work for just a little bit before I was going to be eating crawfish with co-workers.  Bryce and Jerrie were going to my house to have some visitors.  Bryce's Uncle Alan and Alan's two daughters, Shari and Kari were popping in to say hello to them.  Alan is Jerrie's brother in law, married to Carol, Jerrie's sister.  We lost Carol to cancer recently, too.  We actually hadn't seen them since her service.  Anyhow, they were visiting in the living room when Bryce got up to go to the bathroom to clear his trachea.  He was doing this more and more.  The tumor had started eating away at his trachea.  The drainage was something he had to clear often.  He wore bandages on his neck to catch it there too.  The tumor was just always putting stuff out.  He started coughing up blood.

One of the cousins called me and told me to get home.  Meanwhile, Gary had gone to the end of the street to get AJ off of the bus (Bowen went home with a friend that day).  When they walked in, Kari whisked AJ away to his room immediately.  The bleeding couldn't be stopped.  At one point, Jerrie looked at him and said "There's nothing I can do.  There's nowhere to stop the bleeding."  He comforted her and said "I know.  It's OK."

911 was called and arrived in 3 minutes.  Bryce was still talking when they got there.  The bleeding was awful.  It was clear that the tumor had ruptured his carotid artery.  Life Flight was called immediately because they can give pints of blood.  But it didn't matter.  They got Bryce to lay on the bed.  Very soon thereafter, he laid his head back and closed his eyes.  EMS worked very hard on him, but there's nothing that will save you when the carotid ruptures.  It wouldn't have mattered if he was in the ER.  And it's exactly what Dr. P had warned us about when this tumor showed up.

He and Jerrie took the flight to the hospital.  I pulled up to my street as they were taking off.  I walked into a CSI scene in my bedroom.  I handed EMS his paperwork.  My friend drove me and Gary to the hospital.  Jerrie called and said that he was gone.

That is it.  Those are the technical details of what happened in his final hours.  I will write a little bit later today about the emotional stuff & what happened on my end and in the days to follow.  As for Bryce's blog.... I think this is it.

Dear Bowen and AJ,

Thank you, Bryce, for our love adventure

This was all for you guys.  Daddy showed you what strength and determination look like.  He showed you what laughing in the face of adversity looked like.  But mostly, he loves you so, SO much!!  One day, when the time is right, you can read everything that he has here.  Until then, we'll continue to tell Daddy stories, laugh and cry together, and I'll love you as fiercely as he does.  Actually, I'll double it.  I'll love you for both myself and Daddy.
I love you,
Mommy

Pain wins.

Ok, ok...I held out as long as I physically could.  It has been a good 6 month run without any opioid pain management, but I initially had to throw in the towel last Thursday in an attempt to alleviate some of the immense pain that i am having.  It started with a liter of fluids through an IV with a couple of doses of dilaudid.  That was nice.  My ultimate problem is that I have had a lot of radiation to my head and neck.  That radiation is not nice to my muscles, and I tend to have intense, debilitating muscle cramps underneath my jaw, across my face, and across my neck in general.  Thus far I have been getting by with ibuprofen and the like, but the pain today crossed a line.  And just like that, I am back on that dangerous slope of pain control or complete zombie apocalypse.  To me if feels like pain control, but unfortunately to those around me during these times, they would liken me to the walking dead.  Unapproachable, ill-tempered and a general stink that can only be associated with a person who averages about 1 shower a week.  Look, people...I am not proud of that, but it is what it is.  I strive for better, but sometimes taking that 4th nap by noon really just couldn't be avoided.
I had infusion #3 today, and it was much less eventful than the second one.  No passing out, no hospital stay.  All very good things on top of the latest news that I will be switching over in the groups for the clinical trial.  We all know I was going to get this one drug, but now that we have proof that it is not really doing anything right now, my research nurse got them to concede and to allow me to start in the two drug trial beginning tomorrow.  So I will head in to Austin late tomorrow morning and get all my instructions and drugs and we will see how this works.  To be fair, the Keytruda could be working, but things are beginning to spin a bit more out of control than I think we would like, so hopefully we can reign this thing back in.  Disclaimer, I am exhausted.  I probably shouldn't be writing this, but I felt like this is the kind of news that people want to hear.  Super happy to have my brother here with me today at infusion.  I feel like my brother has been living a lie out there in SF, what with his wife and kids and job and normal life...when he is apparently just another master poet.  Hopefully he doesn't mind, so here it is!!

A young man took some Keytruda.
Maybe he mixed in into fooda.
His beard stayed strong and it kept him buzzing along
And with glee it killed that f'n intruda!

-D.K. Stobb

Scan today, results tomorrow

Since Jessica did such an awesome job keeping everybody abreast of my situation while at the hospital, I felt that my input wasn't really needed so I didn't post.  There was a lot of scary stuff going on that week, but we made it through and other than this tricky little spot of cancer in my neck, I am in tip-top shape.  If only my ONE problem wasn't such a killer!

In the hospital with my boys and some EEG hookups

A quick recap: infusion #2 went as planned, but I didn't feel well all morning and it culminated in a fantastic trip to never-neverland after my infusion was completed and I was walking back out into the waiting area.  I don''t know how many out there have experienced a good vasovagal syncope, but it is quite an interesting event.  I have had one before, after my very first surgery when they removed one of my neck drains in the doctors office.  I could handle one every four years or so, but what I have now is a bit excessive.  From the oncology office, they whisked me by ambulance over to Seton Hospital to the emergency room.  I felt good there, but then I could feel the beginnings of another episode, so I told them what was about to happen.  And happen it did, although this time a young ER doctor must have know the perfect way to abort and impending vasovagal episode when he yanked my pants down and stuck his finger up my butt.  WHO KNEW??  In his defense, he claimed to be checking for internal bleeding, but that twinkle in his eye told another story.  They admitted me into the hospital for observation and I stayed there until Friday.  They ran all kinds of fun tests, but in the end I am basically stuck with a situation where my tumor is growing in an area right next to the vagus nerve and tends to illicit these responses from time to time.  I am taking crazy amounts of calcium and muscle relaxers and anti-anxiety pills to try to keep it "under control".  Thus far I put myself into two categories...'zombie' and 'about to pass out'.  Zombie class essentially means I am on the couch or in my bed asleep.  The other one is as it sounds, I am up and about but feel like I could pass out at any given moment.  Such is my life right now.

Me, the day before surgery #1

The scan today is my first scan while on treatment.  I have had two infusions now and this is the first check to see what is happening.  Unfortunately I have the displeasure of watching this cancer grow from the front of my neck, so I know that overall there is progression.  I feel like it has slowed down, stopped in some areas and changed appearances over the last few weeks.  When this scan shows progression, that will put me in a protocol where I have another scan in about 4 weeks.  If that one they also shows progression, they will move me into the other arm of the trial where I will be getting 2 drugs instead of just the one.  To be fair with this first course of treatment, it takes time for the drug to begin to "train" my body to fight the infection.  It can take 8-16 weeks or even longer for the drug to begin to show signs of effectiveness.  That covers the immediate future.  Right now we are living one day at a time and just trying to make it to the next and get those infusions every 21 days.  My next one will be February 1st, that is next Monday.

Me, just before the latest crap-fest

Many thanks to all those who are assisting in this journey.  It was great to see all the friendly faces while I was in the hospital.  The meal support has been great at the house, so humbled by the place that we live and the love and support we receive out here.  Jessica has me on lock down, so I am basically confined to my house with a sentry standing guard over me all day long.  Thank you so much for all your continued thoughts and prayers and good juju and unicorn farts, cookies, stuffed animals and tears.  It's a long tough battle and the support and strength I get from those around me keep me going as best I can.  Much love to all.

Bryce's Hospital Stay

Hello to everyone that follows his blog.  This is Jessica and I am sending a message out through his blog for those that follow him here, but don't to the Facebook thing.  I have been updating on my blog, so you can all read along.

The latest one is:
ChannelJess.Blogspot.com/2016/01/hospital-stayday-3

And you can always be up to date by clicking here:
ChannelJess.Blogspot.com

Merry Christmas!

MERRY CHRISTMAS!  This is such a fun time of the year, it is definitely my favorite.  Such excitement as the holidays approach, it's hard for me to not get caught up with the youthful exuberance of it all.  We are hosting my parent and my sister for Christmas, and the house is finally starting to come together with decorations and presents and holiday cheer.  Christmas is shaping up to be a great day, I can't remember the last time I got to wake up at home and spend the entire day there without having to go ANYWHERE.  That wonderful fact is the thing I am second most excited about, with the first being the prime rib that I am going to cook.  That gets me pumped up on so many other levels.  For whatever reason, I have acquired a serious need for beef after all my surgeries and treatments and recoveries.  Anything and everything beef is all good by me.  This Christmas we are spicing up our old traditions with some new fun things that hopefully all will enjoy.

So I have not been writing much at all, a fact that can be mostly attributed to my extreme enjoyment of life and all the good times that have been had in the recent past.  Jessica posted recently about me being scared, and that is currently still the prevailing emotion.  There is much to be scared of these days, so I thought I would lay some of that out.  It's no secret that my squamous cell carcinoma has returned, and has done so quickly and with no regard for the time of year that it is.  That is rather rude, but it has never been very considerate when it comes to me and my plans.  I have a visible tumor protruding from the left side of my neck, very near to my stoma.  Because of that, I have an open lesion next to the tumor that drains fluid pretty much continuously, so I keep the whole area covered with gauze to shield both the unsuspecting public and soak up the constant drainage.  In addition to that area, there is also a hole that opened up at the top of my most recent skin graft and I am pretty sure my insides are poking out of that one.  Once problem is cancer, another animal all together is all the radiation that I have endured in that area.  Things just done work right in my neck.  Fluid doesn't drain.  Skin doesn't heal.  That's all part of it.  On top of these fun things, I have also felt like crap for a little while now.  There was an infection, then another one.  The most recent development is pain, swelling and fluid collection.  It feels like I have about a gallon of fluid in the left side of my neck.  My body can't drain all the fluid that is generated by the cancer and processes going on in my body as this tumor continues to grow.  So it just collects and sits until it can pop open a hole in my weakened skin or get out an existing opening.  So there is the constant fear of the growing tumor and the unforeseen complications that arise from that.  In addition, I am concerned that the whole area is breaking down and that my breathing will be obstructed and/or I will get drainage that occurs directly down into my trachea and into my lungs.  Suffocation or drowning.  Neither sounds pleasant, but that's what I worry about.  Given the location and the size and rate that it is now growing, I would imagine that if I asked, they would put me in the weeks to live category, maybe months.  Anyway, that's what I worry about.  Oh, that and this cancer growing into and rupturing my carotid artery, that's also a real possibility.

With all that said, I don't have any real good options.  Well, at least any options that are guaranteed to do something.  I had already decided earlier this year that I would not subject myself to the really nasty kill-em-all chemo's that I have endured before.  There is nothing but misery associated with those and I am not interested in that.  So that leaves me with a clinical trial, and it just so happens that a very promising one has opened up right here in Austin and is being facilitated by my oncologist that I have been seeing up here.  Pembrolizumab is the drug that I will be taking and it belongs in a class of drugs known as monoclonal antibodies and works to stimulate my immune system to help fight the cancer.  I have had a similar type of drug before called Cetuximab.  It's exciting in that this drug is showing some unprecedented results in clinical trials dealing with various kinds of cancer, and advanced squamous cell carcinoma of the head and neck is one of the varieties that it is working with.  We aren't talking about full remission and magical results like that, but we are talking about extended life span with a quality of life that is tolerable.  There have been instances of this drug working for incredibly extended periods of time and helping to keep the disease in check for years.  That is where the hope lies.  Just keep it at bay for a couple years, I need to make it to 40.  I will be getting an infusion every 21 days for the foreseeable future, with doctor visits every week and CT scans fairly regularly so they can track my progress.  We will know something either way very soon, I imagine.

I'm still here!

I think that's my new motto, "I'm still here!".  For now.  Much has transpired in the last few weeks, so I thought I would summarize it all here in my own words and let everyone know I am still around and the fight continues.
Those following along at home know that in May, I had quite the surgery full of "-ectomies".  Recovery from that took a while, but I did quite well and we had an EPIC vacation driving across the north and west.  Many followed along as Jessica posted during our journey, and we made some lasting memories that should last the boys a lifetime.  It was a great trip.  Saw lots of awesome places and meaningful people that I have known over the years.  Once back from our trip, it was soon time for my first post operative CT scans and those came back clean.  That was a surprise, but it felt pretty good for the time being.  This was August.  In early October (my birthday actually) I had my next scan and there was something questionable in the imaging.  We agreed to not do anything at this point and just wait another 6 weeks and then do some more imaging.  That happened the week before Thanksgiving and indicated again an area in my left neck that looked questionable.  From there, I was to have a biopsy to confirm cancer at the cellular level.  I arrived for the biopsy, but they couldn't find it with enough confidence to just go jamming a needle in my neck, so I left that appointment with nothing to show for it.  The next attempt would be a CT guided biopsy, and that happened on Friday, the 11th of December.  Results from that do now indicate that my cancer has returned and I have an active tumor in my left neck, very near my stoma.  I have also been dealing with a staph infection in my chest for a few weeks and a nice festering wound near my stoma as well.  Let the good times roll!
So, what is next?  Each recurrence has left me with fewer and fewer options, and this one is no exception.  There are no more real surgical options and radiation is out of the question.  My only real credible option right now is to join in a clinical trial and see what a new drug does for me and my squamous cell carcinoma.  The drug is called Keytruda and it has shown some promising results in prior clinical trial with aggressive cancers, including some of the head and neck.  The drug is not a typical kill everything chemo, it works with and stimulates the body's immune system to help in the fight against these invasive cells.  If all goes as planned, I should start my first round of this treatment within 2 weeks.  In the meantime, I hope to just get back to living again as we have the past 6 months.  I am comforted with the knowledge that we are now where we are supposed to be, among the people we are suppose to be with.  I will continue to draw strength from those around me and do what I must to extend this journey.  I imagine I will post some more in the coming days, but this is about all for right now.

A nice scene from Crater Lake National Park.  That place is well worth a visit.

I'm back, sans half a nipple.

...and just like that, they released me!  I still can't believe it, but I am currently writing this from the comfort of the house I grew up in.  I still have 3 small drains in me, but that discomfort pales in comparison to the discomfort associated with the hospital.  They just never leave you alone.  I will say that this MD Anderson experience was, without a doubt, the best one that I have had.  They listened to me, they were accommodating and they did everything they could to make me as comfortable as possible.  Kudos to them for being so remarkable, but I can say that I hope I never see them again.
The doctors say that everything looks fine right now for me.  I am recovering better than they expected and they saw no reason for me to just hang out in the hospital any longer.  They expected me to be in the hospital 7-10 days, and I was only there for 3.  I was on the pain pump until this morning, then I transitioned to oral pain pills.  They seem to be doing the trick, but I do have pain and at times it gets fairly intense.  My chest and neck area is definitely beginning to resemble film adaptations of Frankenstein's monster.  I also don't remember signing consent for them to remove half of my left nipple.  I asked the question yesterday, where is my left nipple?  Today that question was answered, well at least halfway answered.  It is right on a stitch line that sweeps across my left chest and it looks to only be about half there, but I will save some hope that it returns when I get the stitches out and the skin stretches back out slightly.  Either way, life will go on for now and hopefully we can get some normalcy in the coming months.
The followup plans are unknown currently, but we will likely have a couple appointments on Thursday and then we will be able to head back to our home in Lago Vista.  That will be AWESOME!  We will also probably have followups the next Thursday and Friday, but we can make that quick trip with no problems.  It's all worth it to be home and sleep in my own bed, that is a feeling that can't be replicated or replaced.  After next weeks appointments, I should get a break for a couple of months from any appointments and we can concentrate on summer.  We are in the midst of planning a driving tour of the western part of the US to give the boys some real life experiences with us while we are all healthy enough to do it (mainly that applies to me).  The next couple of days could be interesting, but only time will tell.

Post-op, day 2.

Hi everybody!!

#Brony!!

You might notice that the name of my blog has changed...so I thought I would address that first off.  I decided to change it to reflect what the blog was about versus my personal feelings about this cancer in general.  I still feel that cancer can go and do what my blog title said, but I will release those feelings in other ways now.  Also, my mommy didn't like it and wouldn't even look at the blog, so I changed it so my dear mother could read it herself and not have to depend on my dad to update her after he reads it.  I think that helps them both out immensely and so that is what I have decided to do.
Thanks to all for all the continued love and support that we are getting, it has been amazing.  During these surgeries, I feel like I have the easy part, I just go to sleep and wake up when it is over.  Those closest to me are the ones who go through some tough times.  They have to sit out in the waiting room for hours at a time and let their minds run wild with possibilities while I am being operated on.  That would be super hard on me and I don't know how they do it every time.

I made it through surgery!  I still don't know where my left nipple is, but I did make out alive.  I have been somewhat surprised with my post-operative recovery.  It is going remarkably well.  I was up and moving around the morning after surgery.  I won't lie to you and tell you that it is all sunshine and rainbows, because it is not.  There is pain and there is A LOT of it.  It is no joke, but it is manageable as of right now.  I always want to get up and get moving because that helps me immensely both physically and emotionally.  Breathing has been somewhat of a chore as the chest drains are positioned in a way that cause pretty intense pain as I am breathing, but those were pulled out today.  That was a spectacular occasion.  It was immediate relief and it was much needed.
I am doing ok now, super tired and I have problems focusing for very long and concentrating.  I still have 3 drains in my chest that need to come out, but they are plastic surgery's responsibility and they will have to take then out when the output of the drain falls below a certain number.  That will be the next magical milestone.  They are also talking about releasing me tomorrow or the next day;  I would bet that it will be on Tuesday.  I need to get off the pain pump and until I do that I will be here.  That is truly amazing.  I could be at my home northwest of Austin one week after having my sternum removed.  These doctors are incredible.  
The nurse just left, I am so tired so I think I will lay back and fade out for the evening.  Just thought I would provide a quick update.

Nailed It!

Good Morning!  It's Jessica here again.  I realized late last night, when I got a text from an old friend, that those who do not have a facebook account do not know that Bryce finished surgery.  He did it!

Let's start with his day yesterday.  They started on him at 8:22.  The 2 hour updates that I recieved were as expected; utterly useless.  Then Dr. Pytynia (head & neck) came out with Dr. Sepesi (cardio-thoracic, who was the lead on Bryce's surgery) came out together.  There is gross cancer removed, which is the giant growth that they can see with human eyes.  They removed all of that.  MD Anderson also wants to get clear margins on tissue surrounding gross cancer.

Let's say you have cancer in your pinky finger that takes up everything from the tip of your finger to the middle knuckle.  They want a certain distance around that to have clear margins, too.  They'll get a clear margin at the middle knuckle, but they'll actually remove the entire finger at the base/at your palm, because they get an extra half inch of "questionable tissue" out of the body.

There are 2 spots near his trachea that they consider questionable.  They can't see cancer.  They tested margins on everything that they removed.  A couple of lymph nodes came out.  They cleaned around and above his stoma and were able to keep it in place.  Without removing his trachea, these 2 places had to stay in.  And they do NOT like to take the trach.  There is not something they can put in place for that at this time.

Is it what we wanted to hear?  No.
Is it what we expected?  Yes.
Does it mean he still has cancer?  Unknown.
Did we expect that?  Yes.
Are there success stories out there?  Yes.

There were many surgeons that told Dr. Sepesi that this surgery was pointless and not to do it.  Bryce begged for the chance to fight like hell.  Bryce didn't take the news well last night.  But I told him last night and have reiterated this morning that everyone feels good about this!  This is exactly what we knew we were walking into and the doctors felt great about it too.  His job is to remain positive.  That is our job too.  Mine, his, our support system just keep the faith and #BStrong

Next phase of surgery was the plastic surgeon.  He used Bryce's left pectoral muscle to cover the place where the bone was removed.  He did end up with a small skin flap just under his stoma.  Bada Bing.  Bada Boom.  Done!

He is in an incredible amount of pain.  Not much sleep.  It comes in short patches.  There was a flurry of activity this morning.  But he is sleeping again.

I am going to blog about how moved I am with the amazing support we were shown later today on ChannelJess.Blogspot.com
For now, we try to sleep where we can.  I'll update on him again soon.

Thank you to everyone!  We love you all!  Keep praying!  We feel it!  #Bstrong

{I did this from my phone while B slept.  I didn't want the clicking keys to big him.  Forget about all of the random words that don't belong, the spelling errors & incorrect sentence structure.  I can only see about 2 sentences at a time}

It's go time!!

Good Morning Everyone!!!  This is Jessica sending progress reports on Bryce's blog.  It was a really great send off.  We got to see all of the doctors he has on his team and a few others that we hadn't met yet.  The most important visit was the reveal of the required surgical uniform.  Both Dr. P & her PA, Monica, their unicorn socks on.  There is going to be some down time until the first updates start coming in.  They should start sometime around 10:00.  Then they'll be about every 2 hours.  These updates do not contain much information at all.  Writing blog posts for all of that is pointless.  Unless it's big news, it will come in the way of facebook & twitter statues.

Now..... this surgery could be 5 hours.  It could be 10 hours.  We just don't know.  This is what all we learned in the last week or so.  The cardio-thoracic surgeon will be removing the bone cancer portion (see Bryce's previous blog) for 2-5 hours.  Dr. P will be there just in case the stoma needs to be moved.  They WANT to keep it where it is.  IF that isn't possible, she will move it further down his chest.  Then the plastics team will step in.  This is where they have left us with lots of "options." He wants to do the same pectoral flap procedure that he did last year.  This time they would use his other pec though.  That would take him about an 1-1.5 hours
{Let the IF's begin}
IF the area of bone is bigger than they think, they will use an abdominal flap.  It's the same concept of the pec flap, it's just from his belly.
IF they decide that they need to remove some skin, they will take a skin graft from his thigh because he still has a bad rash on his chest from the chemo.
IF things really do not go as planned for one reason or another, they will do a free flap from his thigh.

The first 2 flaps are something that happen under the skin.  Hard to explain, but they basically tunnel the muscle under the skin into a new place to help protect things.  The free flap gets its name because it is completely unattached from his body and "free" to move around the room, so to speak.  IF they get to that point, the plastics team will be working on him for a lonnnnnnnngggggg time.  Basically, it's like I said before.  We could be here until noon waiting for him to wake up.  It could be 10:00 tonight.  There are also chances of him going to ICU, but we just don't know.

I do have a couple of requests  :)))))  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.

Almost time for the 1st update.  Check the tweeter and the facebook.  I'll be posting soon.  In the meantime..... all positive thoughts!!!!  In place of skittles, rainbows and unicorns, I bring you rainbow unicorn butterfly kitty.  #BStrong

Time to #BStrong!

It's quite the emotional roller coaster that I tend to go through as the surgery draws closer.  The initial adrenaline rush of fight, fight, fight has had time to fester and it gets replaces with feelings of fear and dread.  I try to stay fairly positive as I go through each day, but sometimes the fear wins out and I get stuck wide awake in the middle of the night wondering what life will be like once the surgery is complete.  Those are the times when I have trouble convincing myself that things are going to be OK.  Today we are feeling good about what is to come and are very hopeful that the surgery has a successful outcome and we can continue on for a few more years.  The word of the day is RELAX, and the theme of the week is BE FLEXIBLE.  
Everything is now set and we know what lies ahead...well, sort of.  I will report tomorrow morning at 5:15 am and the surgery is scheduled to get started about 7:30 am.  We met with the plastic surgeon this morning and anesthesiology this afternoon.  Jessica was very displeased with our dear friends in the plastics department, but our appointment with them was awesome and we learned a lot more about what to expect and what could possibly happen.  If everything goes as planned, they will remove portions of both clavicles, the top two ribs on either side of the sternum and the top portion of the sternum itself (the manubrium).  Once the resection is complete, the reconstruction can then begin.  The most optimistic of plans is to "simply" take my left pectoral muscle and fill in the hole that was created and then we are finished.  That is a very simplistic view of it, but that is what we hope happens.  There are all kinds of other options that I have given them my consent to undertake should it become necessary, but everyone is very hopeful that we can get through this without the more dirty options.  It was comforting to hear him say that I should be able to do everything physically that I can right now even after the surgery.  I needed to hear that today.  We actually walked out of plastics feeling really good about everything and I have been pretty calm about what is to come all day.
I currently have 3.5 hours until I need to "get up" for surgery, I doubt much of that time will be spent sleeping.  I am not overly worried or anxious or nervous or any of the usual emotions that I would normally be experiencing.  Instead I just feel really lucky right now and thankful for all the wonderful people that I have in my life.  I am currently at my mom's house in Houston, here with me are my parents, my wife and my brother and sister.  It feels awesome to have everyone here under the same roof where we grew up together and I hate the reason that we are here, but I love the fact that it is happening.
Anyway, just thought I would get one last post out there before the surgery commences.  I am rather tired and just discovered the most incredible cable channel at my parents house, Chiller.  I think it was made just for me.  
Just a quick word about tomorrow...Jessica will be updating my blog throughout the day with news as she gets it.  She has done an amazing job the last two surgeries of chronicling the day and I can't imagine that this time will be any different.  I will pick back up when coherent enough to do so, but for the next day enjoy what she has to say.

I can't thank everyone enough for their support throughout this journey, it helps keep me going on a daily basis.  Tomorrow, I just have to show up, let the doctors do what they do and wake up cancer free for the first time in 3 and a half years.  I shall do my best.

Nothing is for sure, but more is now known

Thought I would throw out a quick update for those interested.  First of all, the socks were a HUGE hit with everybody at the MD Anderson Katy facility.  Might have to get a few more pairs on order soon.  I know that is what everyone is most interested in, so that is what I thought I should start with.  In addition, I was presented with one amazingly awesome shirt from my favorite PA-C in the world, mjanik1!  The shirt paired magically with the socks that I got for them and they assured me that the socks would be part of the surgical uniform worn next Friday.  Hopefully we can get together prior to surgery for a rainbow farting unicorn pre-operative picture.  Then I can introduce to the world the beauty that is my head and neck surgical team.

So we have to wait another day to get the final word on the surgery.  The cardio-thoracic surgeon will have the final say on whether or not we are a go.  The tumor has definitely grown in size over the past 5 weeks or so while I was doing chemo, but there is no evidence of further spread throughout my body.  The no further spread part is the key point here.  Any evidence of further spread would likely completely rule out surgery.  The growth is not good, but hopefully it is not to great in the surgeons opinion to rule out the surgical option.  I am still holding on to hope that the surgery will happen, and we have been given no substantial indication that it won't.

Now we wait another 22 hours or so until I meet with the next surgeon and we can do nothing other than hope for the best.  I will do my part and I trust that all out there that read this today will do theirs.  Fill this world with your prayers, your positive thoughts, good vibes, chi, prana, pneuma, mana, ruah or whatever else you can and I think we can convince these surgeons that I still have a lot of fight in me and this surgery gives me the best chance!

Hopefully I can give a better update tomorrow, but for right now we are in a holding pattern.  Stay strong, think positive and get ready for the awesomeness that will come.

Pre-op scans complete, results to follow...

The nights following my scans are usually the worst!  I expect that tonight will be spent "tossing and turning" and  not doing much sleeping, which is what I want to be doing.  You might notice that I had to use quotation mark for the phrase tossing and turning, but that is only due to my inability to actually toss and turn at night in bed.  I sleep on my back and only on my back, which is more than frustrating because prior to any surgeries, I was a total stomach sleeper.  I will say that my incredibly amazing bed makes this new sleeping arrangement bearable and I would not trade that bed for anything right now.  I was skeptical when we got it, but now that I have it I couldn't think of living life without it.  Life continues and we adapt to the new challenges that are thrust upon us.

I hate the seemingly endless wait between when I get my scans and when I actually talk to a doctor about what those scans reveal about my situation.  I always expect the worst!  Tomorrow I will find out whether or not we will go ahead with surgery as we have been planning or if the course is to be altered.  The pessimistic side of me is sure that the cancer has spread somewhere else and that the surgery would not do me any overall good and will be canceled.  That side wins out on nights like tonight.  The other side, which remains eternally hopeful, says that the scans will show that the cancer really responded to chemo and that this surgery is a go and we still have a chance to beat this thing.  That side gets me through most days, but not tonight.  I can take that trade off.  I will take one lousy night not sleeping for 6 nights of good sleep during a week.  Nights like tonight don't happen often, but they happen.  I think it's inevitable.  At some point reality does set in and I realize that this battle is long and hard and I have an incredibly steep uphill journey ahead of me and at any point I could slip right back down to the bottom.  For the most part I stay fairly level headed and positive but I always retain a certain amount of understanding of my situation.  Nights like tonight remind me that there is so much in this fight that I have no control over, but that is no reason to give up hope.

Tomorrow I see my favorite MD Anderson personnel, the team of people at the satellite office in Katy.  My head and neck surgeon and her PA are two of my favorite people ever!  I came prepared this time and have gifts for them.  They are getting some of the finest rainbow farting unicorn socks ever to come out of Korea.  Those are two lucky ladies, let me tell you.  The only other person I have every given rainbow farting unicorn socks to is my wife, so they are joining an exclusive club.  I could not imagine being in a situation where I had to tell someone that they are going to die and then move on to the next person and go about my day.  Maybe you get used to it or maybe you don't, either way I wouldn't want to do it.  I am not sure what tomorrow holds in store, but I am ready to face it regardless and keep fighting as best I can.  Thanks for following along with us and for caring enough to read my random banter.

Here we go again!

It has been a little while since I wrote anything and much has happened in that relatively short amount of time.  I thought I should get an entry in the books as we have a plan in place moving forward towards a sea of uncertainty.
The first major decision to come out of this latest recurrence is that I will no longer continue my futile attempts at working full time (actually working at all).  That opens a huge door to the uncertain times ahead, but I felt like this time I needed to take that step.  This will give me the opportunity to spend more time at home with Bowen and A.J. as I continue to fight for more time in this world.  It should make for an interesting transition and I am not exactly sure how I am going to pull it off, but it feels like the right move for us right now.  There are a number of pieces that I need to fall in place in the coming months, so hopefully everything works out for the best.
Treatment-wise, I have started a chemotherapy cycle, this week will be infusion #3.  The first infusion was the big one and it was a couple of Thursdays ago.  It involved Erbitux, Docetaxel and Carboplatin...all drugs that I have had before.  This one hit me hard this time.  I spent the better part of a week in bed feeling like absolute crap.  I don't remember a time in my past chemo history where I reacted a badly as I did this time.  Luckily, after about a week, I began feeling slightly better and could stay out of bed for a good portion of the day.  Now I just get Erbitux every week and that doesn't knock me down like the big 3 did.  The Erbitux is an immunotherapy drug that stimulates my immune system to fight the tumor.  It's actually a monoclonal antibody derived from something found in mice, I believe.  The down side to this treatment is a rather nasty rash that covers my head, face, chest and back that is not pleasant.  It's somewhat itchy, somewhat painful and my skin seems to dry out rather severely along with the rash.  I am told that the severity of the rash usually indicates a positive result on the tumor, so hopefully this stuff is making my tumor shrink.  Overall, the goal is to limit growth of this tumor prior to surgery #5.
Surgery #5 is to happen on May 22nd.  This is another non-standard procedure that is somewhat of a hail-Mary attempt at getting this cancer out of my body.  There is nothing easy about it and there are lots of surgeons that will be involved.  It will not be a pleasant surgery and I try not to think about the details too much as it tends to up my level of apprehension about it substantially.  I will have another CT scan about a week before the surgery date and then talk one last time with everybody prior to the surgery.  I shall report on the 22nd and once again put my life in their capable hands.  I don't know the length of the hospital stay and we have no guarantees as to the outcome of this surgery, but all I am asking for is a chance...and a chance I have been given.  Strap in, I feel like it's going to be a bumpy ride but better times are ahead.

On the verge of something big

Here I sit, two full weeks after the fateful scan, still not knowing what the exact course of action will be, but eternally more hopeful than I was the day they told me it was back.  The PET scan AGAIN indicates that this is the only spot of note in my entire body.  This first image is from my PET scan and shows where the tumor is.  

The glowing yellowish area is the tumor and all the reddish hues are normal tissue and the white is bone.  My goodness, this little guy has proved elusive to get rid of!  Seems so simple, just cut it out and move on with your life.  Yet here we are, 4 major surgeries and and the 5th instance of cancerous growth.  The hope has yet to fade that I can actually rid myself of this disease and the wheels are slowly but surely turning in that direction.  

The past two weeks have seen me in Houston a lot seeing A LOT of doctors.  Last week I saw one doctor who is running some clinical trial, one of which my medical oncologist recommended me for.  The feeling coming out of that meeting was that the clinical trials are a last resort and we possibly have more options in my case.  Ok, that is a step in the right direction, but kind of a 180 from what I got the week before.  The next appointment was with a cardio-thoracic surgeon who would be involved if there were to be a surgical option.  He talked about the surgery and stated that it was not impossible, but what is the end goal that we are trying to achieve?  SOME LIFE, is what I am thinking.  I would take two years at this point versus the year that has been prognosticated at this point.  Give me a chance.  That is all I ask and that is what I tell these doctors.  I understand the risks, I understand the odds.  Give me a chance for survival and I will take it in a heartbeat.  I do not care how many surgeries, nor the extent of disfigurement that I must endure.  Give me a chance at life.  After seeing the surgeon, I met with my old radiation oncologist who I requested to see that morning and he happily obliged.  I wanted to get his opinion on everything and hear from him if radiation would possibly be an option.  He furthered our hope and asked me to come back this week to meek with his team of radiation oncologists at the main campus during their planning conference where they look at individual cases and make recommendations.  That was Tuesday and the result was that they would indeed radiate me again if there were no other viable options.  Great, another step in a positive direction...we have further options.  During this time, it became evident that I would need to stick around in Houston into Wednesday to have a biopsy performed on the chest mass in question.  That was done this morning and was not overly pleasant, but I made it through yet another fine needle biopsy.  If you want particulars, search the blog for biopsy and I think I have chronicled the procedure in the past.  It was while I was there that I got the most jarring news to date.  My radiation oncologist had called Jessica and didn't divulge much, but did say they were moving forward with a surgical option sooner rather than later.  My past treatments had involved a lengthy chemo waiting period prior to surgery to see how the tumor responds to that path.  It appears that they are indeed listening to my pleas to fight this things as aggressively as we can and want to perform this surgery as soon as possible.  I don't have the official word, but the schedulers have been calling trying to set things up for 2-3 weeks out.  Looks like we are on the fast track for surgery number 5.  

Things just got real people, and in the morning I will find out just how real they are.  That's all I have right now, but much more to follow when I finally get official word on the path forward.

...and it all comes crashing down (yet again)...

Man, I have felt good over the past three months.  I have been getting used to my new body modifications and learning the nuances of what it means to be a neck breather and electrolarynx talker.  The boys have been playing basketball and recently transitioned into baseball for the duration of the spring and all has been right with the world.  Well that all came to a screeching halt on Thursday morning about 8 am when my doctor walked in and said "It's in your bone."  I had prepared myself for a lot of things that morning, but to hear that the cancer has now spread into the bone of my sternum was NOT something that I was ready to hear.  I think both Jessica and I nearly passed out and there was a rush of activity as we tried to come to grips with what we just heard.  In my bone.  That is just so deflating, crushing, maddening, etc...to hear that I didn't know (and still really don't) what to do or think or say.  I have always held out hope that I could somehow beat this against all the insurmountable odds, but being told that it's in my bone just about popped any and all thoughts I had of my life extending beyond the next year or so.  Damn the bad luck.
So after the initial shock of the news, we settled back in to what needs to happen next.  There was to be a PET scan that afternoon to determine where else in my body it has spread (because it is in the bone, the felt it very likely to be in other places) and the results of the PET would help determine the next course of action.  I had the PET scan at 1 pm and went about my day.  We had a wonderful meal at our favorite German restaurant in Houston and prepared for the next day.  I guess I convinced myself that my best chance would be for it to still be localized in the area I have been dealing with and not to have spread elsewhere in my body.  Appointments yesterday were with my surgeon and the medical oncologist that I see at MD Anderson.  Once again, they only see the cancer in this one area, and once again there is no evidence that it is anywhere else.  Oh how I wish I could get rid of it, but it just will not go away.  Anyway, this development means that I at least have some decent options going forward.  It will again all depend on what happens in the next 3 to 6 months, but there are options and I have expressed to them my desire to continue fighting and do whatever I have to do to give myself a chance for survival.  They were very happy to hear that I am still willing to continue the fight and their demeanor changed the minute I said that I am all in.  I really do have a special place in my heart for this surgeon and her PA, they bring such a dynamic human element into this dark, bitter place and it has been and continues to be refreshing to me in such a depressing clinical setting.  The option going forward is going to be 3 to 6 months of chemo (more on that later) while tracking the tumor progress and hoping for minimal growth or even better would be some shrinkage of the tumor itself.  At the end of this time-frame, if things look favorable I could have YET ANOTHER surgery to remove the section of my sternum and surrounding tissue that contains the offending cancerous growth.  This would be done by a separate team of surgeons, this time cariothoracic specialists.  I don't know the details about this surgery, but it would be dangerous and leave me with not very adequate protection for my heart and other sensitive structures in the center of my chest.  There are ways around that and still many concerns and hurdles to overcome, but it is an option out there in the not too distant future.  I have lots to think about in the coming months and many very important decisions to make regarding my future and the future for my sweet little family.  I can only hope to handle this process as gracefully as I can, but I will go down fighting to the bitter end.  I will not give up on myself or my family and I will put myself through whatever I have to in order to get as much time with them as I can.
I am scheduled to meet with some additional MD Anderson personnel late next week.  On Thursday, I meet with the head of a clinical trial that my medical oncologist is recommending me for and this will likely be the road I go down for chemotherapy this time.  It is a trial of a combination of standard chemo treatment with a new immunotherapy agent that shows promise in advanced metastatic head and neck cancers.  I don't know the details yet, but I should find out more in the next week.  That seems to be the teams advice for the best course of action.  Get me in this clinical trial and see how I respond to treatment and then reassess and go from there.  It's not the greatest option, but it is what I have and what I will do.  I have told them that I will see my 40th birthday, so that is the goal.  Get me two and a half more years minimum here with my kids and I will consider myself a lucky man.  On Friday of next week I will meet with a cardiothoracic surgeon to just talk about what that surgery would be like and what my options are with that approach, should it become viable down the road.
That's about it, I just wanted to throw out a quick note about the recent developments to any who are interested.  As long as I continue to draw breaths in this world, I remain ever hopeful that I can overcome the challenges before me.  Thank you for the support you have given me and my family throughout this entire process.  And so it continues...

4 weeks out

We are rapidly approaching 4 weeks since I had the latest surgery.  Everything continues to progress nicely, I suppose.  I had a days worth of appointments last Monday, the 22nd of December in Houston at MD Anderson.  There were three appointments on the schedule, first was speech pathology, followed by the plastic surgeon and finished with my ENT surgeon.  The speech pathologist set me up with a new type of HME filter holders, this kind was adhesive backed and doesn't require a neck strap.  For those unfamiliar, I no longer breathe through my nose/mouth combo, instead I draw my breaths through a hole in my neck that leads directly to my lungs (the opening is called a stoma).  I am what is know as a neck breather now.  The nose has a couple of important functions that I no longer get the benefit of.  It filters the air that is headed towards the lungs and provides moisture for that air as it travels into the body.  I no longer have any natural means of filtration or humidification, therefore, I must replace that with an artificial means to accomplish these functions.  Until last Monday, I used a larytube, held in place with a cloth strap that wrapped around my neck.  The opening of the larytube holds a small, round filter/humidification insert that I change every day.  The adhesive pad simply sticks to my neck around the stoma and a filter cartridge is inserted and I can go about my day.  I like it much better than the tube/necklace combination as I barely notice that it is there during my daily activities.  The tube annoys my airway and makes me feel like there is always something in my trachea about two inches in and I feel like I need to cough much more often.  I still have to use the larytube when I sleep, but at least I have some options as I get used to daily life as a dumb neck breather.

My boys on their new trampoline

We went to one of the restaurants in the complex so that Jessica could have breakfast and got a call soon that my swallow study was scheduled shortly and we needed to head back over to one of the imaging areas in the main campus.  The swallow study was pretty cool and I was able to see a lot of the action in real time.  It involves sitting in an x-ray booth and swallowing a barium solution while the technician records video of my upper body as I chew and swallow.  There were two concentrations of barium solutions, one very liquid and the other the consistency of pudding.  Neither tasted good at all, but the pudding was revolting enough to cause some gagging, but I did swallow it.  Swallowing was deemed good enough to let me start eating food, but I was advised that I should take it easy and start slow.  Soft foods and liquids.  No cheeseburgers.  One step closer, but not quite there yet!
The visit with the plastic surgeon went well and they were able to remove the stitches.  They really did a number on my neck this time and I don't think having the stitches in for three weeks did me any favors.  The stitches came out easy enough and other than it taking an hour longer than it should have, the visit was uneventful.
From the medical center, we raced out to the Memorial City office to meet with my ENT surgeon.  This was our first visit to this office and it took some time to find it, but we made it and the entire visit didn't take too long.  Overall, the visit was good.  I got to talk with the surgeon and her PA, both of which I have known for too long now.  My surgeon reiterated how good she feels about the outcome of the surgery and the results of the pathology that we got back recently.  She always likes to give me warnings that I usually just shrug off but this time she actually chuckled a little and said "you aren't going to listen to me at all, are you?" as she gave me some of her guidelines on what I should and should not eat.  She talked a little about me being near water and I held my hand to my upper chest and said I would only get in the water that deep, to which she held her hand at her knee and recommended that I not get in deeper than that.  Somewhere in between is probably where I will end up, although I don't have to worry about that for a while.  I found out also that the voice prosthesis is not a done deal yet.  They need to see in the next CT scan results what the inside of my neck actually looks like and where everything is in order to know if they can punch the hole or not.  The problem is my pectoral flap that they moved and stretched in this procedure and it's location relative to the spot where they will have to punch the hole between my trachea and esophagus.  If it is in the way, I might not be able to have the prosthesis, but we will have to wait and see.  My official followup plan is to have a CT scan roughly 8 weeks out from surgery.  That will be the new baseline and will tell them more about the TEP procedure that I can hopefully have.  After the baseline CT, I will have a CT every 3 months to look for new tumor growth or trouble spots.  Other than that, it is just rest and recover.  
Still trying to get used to my inability to speak.  I get frustrated very easily.  Very, very easily.  I hate the electrolarynx, but I guess I need to get some practice with it.  I am reading a lot about esophageal speech, but it appears to be tough to master and take a long time to get good at.  There are options, but nothing will happen overnight.  I need to start doing some physical therapy and learn to massage out the fluid that builds up on the right side of my neck, but I am still just focusing on resting and getting used to my new life.  That seems to be enough right now.

Dumb guy problems.

This is just a quick entry to complain about my two main problems, me being dumb is number one and my inability to eat is the second.  I am currently living in this world as the definition of the word dumb.  One of them, at least.  It continues to be very interesting going about daily activities with a complete inability to speak.  My current solution is to use an app on my phone and type anything I need to say and then either use the phone speaker or any one of the 12 bluetooth speakers that I have.  My favorite has to be using BROCK.  To those unfamiliar, BROCK is the 5th member or our tiny family.  He came into our lives almost one year ago and has brought immeasurable joy to not just the four of us, but to countless others that happen to cross paths with him.  You have probably guessed by now that BROCK is actually my suitcase-sized rolling bluetooth speaker officially named The Block Rocker.  Paired with my phone, I can be in my room and I can yell at the boys on the other side of the house.  When I was in the hospital, the default voice that my phone spoke in was an unbelievably dissatisfying voice that Jessica called Linda.  Very female and very much not what I wanted to sound like when I was trying to argue with the nurse.  And when things got really heated, I don't think my anger came through on the white board that I was trying to communicate with.  On the drive back to Lago Vista, as Jessica expertly chauffeured me towards home, I downloaded my new voice.  Officially it is called The Dark Lord, but it is now the voice that embodies all that is Bryce.  The downside to all of this technological communication is that it happens at the speed of texting.  By the time I have something typed out in a normal conversation, things have progressed four or five thoughts past where we were when I started typing.  Unless those involved patiently wait for the dumb guy to finish typing before continuing the conversation.  It is incredibly frustrating.  Frustration is my new go to emotion.  In the long run, I feel like this will help me as a person, especially with my patience...which was severely lacking to begin with.  SOME patience is way better than absolutely none at all.  Currently, I am learning to be an observer, interjecting myself when I need to and the situation demands it.
The second problem is one I struggle with every day.  I have been hungry since I woke up immediately after surgery.  These tube feeding just don't cut it and it still feels like I am constantly messing with these "feedings".  I started juicing this week again and putting the vegetable juice through my tube and that has led to some interesting sensations.  It is very interesting how much I can actually taste when I put liquid directly into my stomach.  I suppose it has something to do with gas released during digestion travelling up my esophagus and then being expelled as a burp.  It is almost immediate, however, and I didn't notice it until I started pouring in kale-spinach-carrot-beet juice.  I was looking forward to NOT having to taste it, but as is so often the case in my life, it didn't work out the way that I was hoping.  At least I am getting something in my belly other than baby formula, a little diversity is good for my tummy.  Still looking forward to that glorious first cheeseburger, although I am a bit concerned with my chewing ability now that I have had so much time without really working out my jaw.  The left side of my jaw is still mobility impaired and painful from the second surgery and first round of radiation that focused treatment in that area.  The muscles are always tight over there and they get stiff and crampy when I haven't used them in awhile.  Any pain will be well worth it to once again get the pleasure of eating normally again.  I will likely make myself sick the first day back on the eating wagon, but I have already prepared myself for that and will gladly accept my punishment.  I can't be around people who are eating anymore, so I spend family dinner time laying in bed listening to the frivolity happening at the dinner table.  That is much better for everyone.  Who needs the dumb guy sitting at the table drooling over the meal of the day and getting increasingly annoyed by the sounds of people eating? Nobody living on Rockefeller Cove, of that I am sure.

I was discharged from the home health service yesterday, so that is a step in the right direction, I suppose.  I report next Monday to have the stitches removed and visit the surgeon for the first time since surgery.  Should be fairly routine and I am not expecting much to come of it at all.  That is the day, however, that I have my best chance of eating normally for the first time.  They will do a barium swallow study to see how my swallow function is post surgery.  I really hope that I ace that test.  I don't know how much more of this I can take.  Monday shall either be a very good day or a very bad day.  Again, time will tell.

A full week at home!

It is now Monday, December 15th, 2014 and I have been recovering at my house on the 17th hole of the Highland Lakes Golf Course for exactly one week.  The time has flown by and I continue to improve every day.  I probably mentioned this before, but this time feels totally different for whatever reason.  Physically I am able to do much, much more than I have in the past and mentally I am filled with much needed hope and feelings of finally being able to put all of this behind me and a vision for the future.  It has now officially been almost 3 years since I first was diagnosed with squamous cell carcinoma and SO much has happened in that time.  It feels like I have been fighting this my whole life, or at least a good portion of it...but it has only been 3 years.  That seems like such a short amount of time when I think about the rest of my life, but it also feels like an eternity to me.  It is crazy how the mind works (my mind, at least).  I don't have the greatest memory in the world (just ask Jessica about that), but I usually remember the big things.  My mind has erased a good portion of the events leading up to the surgery on December 2nd.  Just the normal everyday stuff.  We had a great Thanksgiving day with my entire family.  My mom and dad were at their house up here, along with my sister and her family and then my brother and his brood arrived on Thanksgiving day.  I don't really remember any of it.  We had family pictures made that Saturday along with a birthday party celebrating AJ's 8th and my brothers youngest daughters 1st.  I couldn't tell you what happened that day if I had to.  Nothing.  Erased completely.  Pretty sure I went to work during that week, but I don't know when or what I did.  The one thing that sticks out in my mind is immediately prior to surgery, after I made my way on to the surgical table in the operating room, surrounded by a team of medical professionals and hooked up to the gas they always give me to relax me and begin the knock-out process.  I reached out for my ENT surgeon, Dr. Pytynia, and told her that my name was Bryce and to stop calling me Mr. Stobb.  That's it.  Apparently that is the one important thing that I needed to remember about this whole ordeal.
Liquid feedings suck.  They say that it is a great way to recover.  No need to worry about eating, just hook your tube up to a bag filled with formula, let it drain into your stomach and get on with your day.  On one hand, yes, it is a very simple process.  I understand exactly what they mean, as eating has been very difficult after most of the surgeries I have had.  What they don't tell you (and maybe it is just me) is how incredibly unsatisfying it is to be fed in this manner.  Sure, I get my calories in and the nutrition I am getting fills me up.  It fills me up, but it is, in NO way satisfying.  I want a freaking cheeseburger.  I want to smell it (which, interestingly enough, I probably won't be able to do as I don't really smell anything anymore), I want to bite into it and taste it, i want to chew it up.  All those sensations are lost when you pour liquid directly into your stomach, bypassing the best part, the sensory delights that accompany the act of eating.  It is absolutely maddening having to watch everyone around me eat while I sit there hooked up to a bag on an IV pole and fluid slowly drips directly into my stomach.  I have one more week until my stitches come out and I have my swallow study to make sure I am capable of eating.  I can assure you right now that I am capable.  I drank some water yesterday to test out the function of my throat and esophagus.  Although very strange feeling, I can definitely ingest a mouth full of water.  The strangeness has to do with a lack of feeling in my throat and upper esophagus, I think.  I feel the liquid in my mouth and then I swallow and it is gone.  I don't feel it go anywhere, but it is undoubtedly not in my mouth anymore.  I guess I don't have feeling back there where they stitched me up anymore, which could pose a threat to someone who breathes normally.  That could be a choking hazard, but when you breathe through a hole in your neck, I doubt that it is really a big deal.  Speaking of eating, I think it is now time for my breakfast.  Two cans of formula, some water and a bunch of medicine.  Try not to be jealous.

Recovery continues to go very well.  I received great news on Friday in the form of a pathology report from surgery that is very promising.  For once, the surgery yielded no surprises and the results lined up with expectations going in.  Basically, they got all the cancer out that they knew about, and the suspicious spots they took out were not cancerous.  While this does not mean I am completely out of the woods yet, it is a big step in the right direction.  Time will tell what the final outcome is, but for now it feels so good feeling good again.

Back to it.

Greetings, everybody!  It is I, Bryce, back from the brink of insanity and here to regale you with stories from the edge.  OK, so that is probably a bit much...but I am here to update everyone in my own words the major events of the last week or so.  Jessica did a fantastic job updating in my absence, in addition to doing an amazing job taking care of me and watching over me during my hospital stay.

Speaking of the hospital, let's talk a bit about that.  I really like my surgeon and the team of people that perform my surgeries there at MD Anderson.  I like them a lot and I think they do an incredible job doing what they do and feel like they have done amazing work on me, especially this time around.  This surgery could have been so much worse, but they did everything they could to take it easy on my and make the impact to my body (and consequently, my life) much less severe, I think.  The big changes to my body are that my trachea now exits  my chest at the base of my neck, so I have a large hole there now and I have no ability to talk whatsoever.  Time will tell if they got everything and my body is now rid of the cancer, but if it is, I will gladly take that trade off.  They were able to fill the newly created voids in my neck with the existing flap that I got in the last surgery (my former right pectoral muscle) and did not have to re-purpose my left pectoral and for that, I am very glad.  I still have a lot of swelling in my right neck, so that looks kind of funky, but I can honestly tell you that I am extremely happy to be alive right now and considering the scenarios that I had running through my mind in the weeks before surgery, I am amazed at the outcome of this surgery and how well I have recovered to this point.  So that is the good, let's talk a bit about the bad.  The hospital stay there was, again, a complete nightmare.  The nice thing about living in my body for the last 37 years is that I kind of know it.  Even through all the changes, I know what it feels like when I have a full bladder and need to pee.  I have always had issues using the bathroom after these surgeries, especially after they remove the Foley catheter...but I can do it when my body has enough fluid in it to need to do so.  The motto of the MD Anderson nursing manual must be: "Force a catheter up their pee-hole, ask questions later".  They again evacuated my bladder by using a straight catheter because they felt I was not outputting enough, ignoring the fact, in my opinion, that I was not getting very much in the way of fluids at that point.  The straight catheter, in addition to relieving me of piss, also greatly pisses me off.  I argued with them relentlessly, which is EXTREMELY hard to do when you do not have the ability to talk.  I was mad.  Even after the first straight catheter, they were about to try it a second time and this time I was not going to let them do it.  I gave them mathematical representations of my input versus output, I pleaded with them.  I know my body, I know what it feels like when there is fluid in my bladder, I know how to use the bathroom in a way that I can comfortably do it even after these surgeries.  They did not listen to me at all.  They never do.  They brought in the first (of 2) ultrasound machines to see how much fluid was in me.  None.  Couldn't find any.  At that point, they could have believed me when I said I didn't have anything in there, but they didn't.  They went and got ANOTHER ultrasound machine.  The results from the second machine?  Nothing.  There was absolutely nothing in my bladder.  SHOCKING.  They left dejected, and I was the happiest I had been in a long while.  It was such a satisfying feeling when they came back in to let me know they consulted with my surgeon's fellow and he said I might be dehydrated and to give me a liter of fluids.  The happiness was short lived, however, as their insatiable desire to put things in the many output only orifices of the body once again reared its ugly head and they turned their attention to the movement of my bowels.  I won't go in to detail on that one, but lets just say they won that battle.  After just a short 6 night stay in the hospital, I was discharged on Sunday and we made the 3 hour drive back to Lago Vista and settled back in to the comforts of home and things got much, much better.

Now that the surgery is behind me, I can definitely say that the build up to it was far worse than the actual event itself.  Prior to surgery, one of my biggest fears was feeling trapped inside my body with no way to communicate my thoughts since I didn't have a voice.  Some of that was realized and I still struggle with communication now, but those first few days it was maddening.  It is an incredibly frustrating experience to suddenly not have the ability to talk, and I will have to work on my patience in the coming months.  Overall, however, I am feeling better than I have in months.  There is no longer the stress of the unknown from a radical surgery, I now know what I am faced with and can adjust accordingly.  For now, I am at home resting and recovering.  I am recovering remarkably well for what I have been through, I think.  This surgery was one of the more invasive and yet I am recovering better from this one than I have from any of the previous.  Blind optimism says that I am recovering so well because they got everything out and my body is now free to heal itself minus any cancerous cell growth, so let's go with that.  I have more to say, but Jessica really wants me to post something, so this is it for now.  I have until the 22nd before my next appointment, so I have some time to rest.