Clear for going on 7 years, but I'm back...

First a little history:

In April of 2010 I was diagnosed with SCC unknown primary with golf ball sized tumor on right neck.

i had surgery to include tonsillectomy and 40 or so lymph nodes removed.  Pathology showed one tumor with clean  margins.  Decision was made to not radiate or use chemo, but instead wait and see for the primary to rear its head.  The primary never showed and I received NED report after NED report eventually moving beyond the five year mark.  I thought we had this thing beat.

Flash forward to December 23rd of 2016:

I was actually playing a video game in our living room as my wife was doing some Christmas baking, and the kids were happily buzzing around the house in "holiday mode."  I had some stiffness in my right neck from sleeping in a weird position and was massaging the area when I came plum sized hard mass near the collarbone.  I knew right away that it was cancer and that perhaps that primary was still somewhere in my head and neck spawning off more tumors.  Pretty scary thought since it has now had several years to spread.  My last appointment at the cancer center was almost one year earlier.

I immediately pulled my wife aside and explained what we were looking at, but insisted we put it out of our minds, for our kids sake for a few days and enjoy Christmas.  We leaned on each other and prayed a lot.

On December 27th we went to the Oncolgist, at the Wilmot Cancer Center in Rochester NY, and he confirmed by needle biopsy that it was SCC.  A quick scope showed no primary and scans were scheduled.

A PET showed the tumor, about 4cm, near the right collarbone and nothing else.  They told me they have never seen a patient present with two unknown primaries for the same cancer (SCC Head and Neck).  They drew up a plan for rads and chemo, and now it was time to hurry up and wait.

My beautiful wife suggested that we get a second opinion, and after briefly resisting I agreed, and we went to Sloan Kettering to meet with a team there.  We first met with the Radiation Oncolgist, then the Medical Oncologist, and finally at the end of a very long day, we met with the Surgical Oncolgist.  The Radiation Oncolgist scoped me, found no primary, and agreed to the plan my team at home had proposed,  but said that I should not get a PEG.  The Medical Oncolgist agreed with my Doctor's plan to use Cisplatin daily for seven weeks.

The third visit of the day was a game changer.  Dr. Ganley insisted on scoping me yet again and I knew right away that it was unlike other scopes I had.  I can only describe it as interactive.  He coached me to tilt my head, stick my tongue out, and then up, then right and left.  This seemed to go on forever when he finally said, "I think I found it."  I felt my eyes fill with tears and felt deep down that this primary was finally found and now we can properly attack it.  Doctor Ganley said that the tumor was super tiny and asked if I felt up for a biopsy.  I said, yes, and spent the next several minutes in as much discomfort as I have ever felt.  I had to move my neck and tongue into a very particular position as he attempted to snip enough of the tiny tumor to be properly tested.  After several attempts, he said that he thinks he got a good enough sized chunk to test.  

Several days later, Doctor Ganley called my cell and said that the spot on my lower left tongue base was indeed cancer.  My Doctors were practically in disbelief and I am now a huge believer in second opinions.

Of course this new info would mean an even more aggressive treatment course as I now have disease on both the left and right sides.

On February 3rd I had the PEG installed and on February 13th I started 35/7 rads and weekly Cisplatin.  I ended up getting in 6 of 7 chemo treatments as the nausea made the 7th treatment too risky.

As of this past Friday, I am done with treatment and have rung the bell.  Treatment was not bad until the last week when a switch was flipped and the throat pain went through the roof.  I am presently doing all nutrition through my tube, but am seeing some improvement in my throat.  My faith and wonderful circle of friends and family are getting me through.  I recognize many of you from my stint back in 2010, and was reminded how helpful this community was and is.

Thanks for reading through this long yet condensed story and God bless you all!