Thursday, December 24, 2015

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.

Wednesday, December 16, 2015

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.