Still muddled, but at least I have a path!!

Two posts in one day!  I feel like such an overachiever!  

I now have a path forward.  Turns out, when MD Anderson doctors let you know you are probably going to die, they like to then leave you guessing for almost a week as to what the recommended course of treatment is.  Granted, there are lots of doctors to talk with and options to mull over, but the one person left out of the communication loop is the unfortunate patient, in this case, ME!!  Anyway, we talked with the medical oncologist and got the recommended path forward that gives me any hope for a curative solution.  Many other paths lead only to palliative options, but this one gives me a small chance of a complete cure.  So that's it, this is where we go now.

First, let me say thank you to all of you following along with this journey.  Many of you contact myself, or Jessica or leave notes on the blog or Facebook, and I would like to give my heartfelt thanks for your concern, thoughts, prayers, and anything else you are doing directly and indirectly for me and my family.  This is not an easy road that I am forced to walk down and, if I had the choice, I would be walking elsewhere.  Honestly, from the beginning, this blog was meant to serve as a record of my struggles in writing so that when my sons were old enough to understand they could read what I went through and maybe find comfort in my own words as they grew older and understand the choices that I had to make.  It has now become so much more to me, and also (I think) to Jessica and those that chose to follow along.  It has been hard, harder than anything that I have ever done and I feel that it is going to be even harder in the coming months.

There are no more biopsies scheduled or appointments this week.  I can stay home and enjoy my house and my family and going to work and maybe just feel quasi-normal for a few more days.  The plan in place is to go forward with intense chemotherapy with drugs that I have not yet been given and hope that my tumor responds by either not growing or shrinking.  This part will last 6 weeks and will being next Tuesday, the 30th of September.  After that, I will have a CT scan to assess the progression of disease since my last scan.  If the results of that are promising and no new issues develop, I will go forward with another radical surgery roughly 4 weeks after finishing chemotherapy.  This, realistically, is my only CURATIVE option.  Everything else would fall in the PALLIATIVE category and I feel that if there is ANY possibility of a cure, I have to take that road.  There are still treatment options after this, but at that point they are guaranteed to be palliative.  I have to go the route of a possible cure for everybody, for my wife, for my kids, for my mom and dad, for my sister and her family, for my brother and his family, for the family that I married in to (morning sausage anyone??) and for the countless others that have shared my life and helped mold me into who I am today.  This disease has already taken so much: part of my tongue, my right pectoral muscle, much of the underlying structure of my neck, a normal looking neck, my original voice, my ability to lead a completely normal life and will take my life one day...but I will be able to say that I did everything I could to fight and I always did it with the intention of saving my life.  It wasn't and will not be easy, but the path to a cure is the direction I have always taken and will continue to take.  Just a small chance, but I will take that chance.

And so onward we go...the next six weeks will determine the rest of my life.  All I can do is fill myself with hope that my body responds to the chemo and that I can have the surgery.  Side note quickly, there was going to be another biopsy this week, but consensus is that it wouldn't be reachable by any standard biopsy means and so we forego that in lieu of starting chemo NOW.  Starting on the 30th of September, I will begin weekly chemo regimens with drugs including Carboplatin, Docetaxel and Cetuximab.  Pretty sure my tumor is already shrinking just seeing their names written down.  Here's to hope!!

A muddled path forward

Results came back in last week when I went for a biopsy and it is confirmed that the spot in question is again a recurrence of squamous cell carcinoma.  In addition, there are a couple other spots of concern in my neck area that I will have another biopsy this week to determine if they are SCC as well.  This is somewhat problematic.

My surgeon can remove the main tumor, along with my voice box and leave me with no voice and a hole in my neck to breathe through for the remainder of my life (however long that would be).  My surgeon's opinion is that left untreated, I would have less than one year of life left, if that.  She is confident that she can perform the surgery and that I would recover from it, but she doesn't know that it would extend that year because of the possibility of additional tumor growth.  That is why I need the additional biopsies this week.  IF it is only the one tumor and everything else comes back 'clean', there is a SMALL chance that the surgery could totally cure me of this disease.  If that is the case, then I would likely elect to have the surgery.  That would be the only way I will consider it.  These surgeries are hard.  They are hard on everybody.  Physically and emotionally.  All other prior surgeries have not produced the intended outcome, and I fear this one would be the same.  My thought process has shifted a bit and am leaning more towards treating this in a different manner.

It all involves decisions that are extremely hard to make.  Decisions that I never thought I would have to make.  Decisions that no person should have to make.  Decisions that greatly impact my life and the lives of all the people close to me.  I don't particularly want to die right now (or in the next year), so I have to be prepared to make the best decision that I feel will get me the most amount of time here on this earth.  Is it worth 6 months of surgery and recovery with a feeding tube and no voice if it doesn't gain me any more time?  I don't think so.  I would rather live that last year with my voice and relatively healthy until ultimately succumbing to the disease.  I am looking into clinical trials as an option, to see if my cancer responds to a different drug combination as to this point, all I have been given are platinum based chemotherapy drugs.  I also don't have all the info needed to make these decisions and so I feel rather helpless.  The last time I talked to the medical oncologist he was talking about analyzing the genetic makeup of the tumor to see if there are targeted therapies that show promise, so I need to talk to him about that.  Hopefully this week will help fill in some holes and I can feel better about a path forward.  Right now I feel like I am spiraling out of control and it is hard to get my thoughts and emotions in check.  I am filled with such unbelievable sadness and anger and a plethora of other emotions and they come and go in waves.  Some days are better, but others are so very hard just to get through.  
I keep telling Jessica that it will get better and I truly think it will, but right now it is so very hard to make it through the day without tears.  I can not give up fighting and I can not lose hope.  And so I continue on, full of hope that I find something that will work.  Something that will give me a little extra time with Bowen and A.J.  I am so torn, though, as I also do not want them to watch their dad just waste away and die.  I would do anything for them, they are my life and they mean everything to me.  I am so proud of who they are even right now at 7 and 9 years old and it makes me stand so much taller knowing that those two little boys are MY boys.  They are going to lead such amazing lives and go on to do incredible things!  And so we carry on!  We learn a little more each day and hopefully will have a plan in place and a direction that we start heading soon.  It will be a hard road ahead, but together we will prevail.  The darkness shall not overcome.

A BUMP in the road.

Anybody who may be easily offended should probably stop reading at this point in this blog entry.  This likely will not be a very pleasant read.
To quote Jessica from this morning, shortly after the first doctor entered the room, "FUCK!".  A truer word has never been spoken.  Not sure that any other phrase could encapsulate the feelings in a room better than those four letters did.  In hindsight, the news probably should have been expected when the first doctor to come in (a very skilled and pleasant surgeon named Dr. Pytynia) appeared extremely disheveled and began crying almost as quickly as Jessica.
Perhaps I should back up a step...I am now about 6 weeks removed from finishing my chemo and radiation treatment schedule to combat the latest re-occurrence of my SCC (squamous cell carcinoma).  Everything has been going great, recovering nicely in my new home on a hill, on a golf course, overlooking the hill country, etc...Taste is back, swallowing ability is back chewing quasi-normally, just overall feeling like a normal person again.  Only thing remaining out of kilter is the missing pectoral muscle and a Franken-neck that just takes some getting used to so as not to illicit slack-jawed stares by innocent passerbys.  So 6 weeks after treatment happens to be the perfect time to perform a CT scan on my head and neck and check out all the cool changes that have occurred since the last one in May.  Sounds innocent enough.

For better or for worse, I know now definitively that I will ultimately die as a result of this disease.  The only unknown now is the timing.  There is a spot on my voicebox in an area of concern from the last surgery, growing right next to the marker placed there during surgery to help aim the radiation treatment to the exact location.  This part of my body received the highest dose of ionizing radiation of any area, and this spot is very concerning for many reasons.  This is not how it was supposed to happen.  Up to this point, I have been fairly good about just taking it all in and accepting it for what it is.  I am now, for the first time, feeling very deflated and pretty freaking hopeless.  It's a very surreal situation when the doctors don't really know what to say, but they try their best to let you know that you are completely fucked in the nicest way possible.  Further radiation is not an option, my body can not handle it.  More surgery could be an option (depending on further test results) but will render me completely unable to speak and does not guarantee anything other than the loss of my voice.  It would also be another radical surgery and extremely complicated and risky and blah, blah, blah...  "Managing" the disease with chemotherapy for the rest of my life is also on the table, but there are many differing paths and right now the path is not clear.
Here is what I know...I will be going back to Houston next Wednesday for a couple of ultrasound guided needle biopsies.  Later that same day, I will have a full body PET scan. This scan will tell us whether it has spread to other parts of my body (likely the lungs) better know what path to take.  After the day of tests on Wednesday, I will again meet with the doctors on Thursday to talk about the results and what my best options are.  Put simply, I am in no IMMEDIATE danger of coming up dead, but am headed that way and will need to do something drastic to keep the party going as long as possible.  Also to be considered is my quality of life.  Very difficult and important decisions to be made in the near future.  I pray for strength that I can make them with a clear mind but such a heavy heart.  There is one best case outcome that I can think of so I will lay this out as it is in the overall realm of possibilities, just way down there on the probability scale.  It is possible that this growth occurred between the time I had surgery and the time that treatment really began affecting the rapidly growing tumor cells.  If this spot turns out to not be an active tumor, I could get out of this thing relatively unscathed.  Like I said, it's a possibility and  just about the only thing I can cling to at this point.  I will update again when I know more.