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.