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.