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}