Since all of my previous treatments, when I get sick, I get more sick than I ever did before since I do not have many lymph nodes in my neck to help drain.  The beginning of March 2019 I got what I thought was a really bad sinus infection.  So I went on antibiotics, which cleared my head congestion but didn’t do anything else.  I started having trouble breathing.  My voice was going in and out. It didn’t hurt.  I no longer felt sick. I just couldn’t breathe normal.  My voice wasn’t my new normal and I just KNEW something was wrong.  I wasn’t scheduled for my next set of scans until the end of April 2019 but I knew I had to be seen.  

I called my ENT and they were able to get me in that week (by the way I sounded over the phone) but I couldn’t get my CT/MRI scans done until  the day after my office visit.  So I went to my doctor appointment and my doctor scoped me in the office as usual.  My vocal cords look great!  Swollen but great.  It’s laryngitis.  I think okay that’s great! Then, I told my doctor about my trouble breathing and he informed me that with all the swelling in my larynx and radiation effects it is very possible I am feeling the shortness of breath and it could also be bronchitis.  “Okay I am just making this stuff up in my head my larynx is great…I will be fine,” I think to myself.  I will start the prescribed steroids and go from there.  However, deep down inside I just KNEW that’s not what it was.  From then, my breathing got worse but of course I just made the connection that now I had high anxiety with waiting on my CT/MRI results to come back.  

So then I waited a few days for my results to come back and it showed questionable areas on my trachea (hence the trouble breathing).  I was informed that I now need to have a PET scan to get more detail of the questionable areas BUT I should wait until the steroids cleared my system so false positives don’t show on the scan.  My doctor honestly thought my vocal cords looked beautiful.  I had the best surgeons and oncologist in the country (hence going to the Mayo Clinic, Johns Hopkins and Penn).  There is no way this cancer could return.  I on the other hand was no so confident but I also didn’t believe with all that I have been through that the cancer would return this soon.  (I knew from having radiation I had a higher chance of having cancer again in my lifetime simply because of my age, but I thought it would be much later in life…if ever).  

April 1, 2019 – PET scan completed

April 2, 2019 – PET scan results came back highly suspicious with two location on my trachea (windpipe) hence the breathing difficulty and questionable lymph node.  

April 3, 2019 – I met with a doctor to perform  a bronchoscope biopsy under anesthesia.  

April 4, 2019 – Brochoscope completed at Penn.  This biopsy will determine exact staging of the cancer and identify exact location in order to determine what treatment options are the best.  Biopsy results will take 3-5 days to come back and then the tumor board will meet to discuss best treatment options.   The tumor board meets once a week on Thursdays so I am hoping to have a little more knowledge the end of next week.

At first when the doctors viewed the scans the one tumor looked inoperable, however after the biopsy it appears it may be operable BUT of course only one doctor in the country would be recommended due to the complexity.  The small amount I know is I believe that doctor is in Boston.  Surgery most likely won’t be the only treatment.   Radiation, chemotherapy, immunotherapy were all options mentioned but it is really going to depend on the biopsy results.  My ENT doctor at Penn already connected with my radiologist at Johns Hopkins to update him.

April 5, 2019 – I am waiting…for results, for tumor boards to meet at Penn and at Hopkins, for doctors appointments, for more information.  It totally SUCKS!