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...