“Thank you lord the worst is over”.
Of coarse this beast we deal with could always come back, but for now (a little over a 15 months later) the last hurdle has been passed. I was released from the hospital today after what we thought was to be the simplest part of my recovery and our journey into total remission.
Let me cover some background for those that do not know me, I plan on making this fairly long so those that don’t care about my treatment plan can just skip this section. Our journey started in May of 2008 when a lump was noticed on my left neck just under my ear. After an error in reading the first CT scan and an MRI that was also misread my second ENT gave me a positive diagnosis of SSC of the left tonsil. I began treatments at the Mayo Clinic in MN, I felt I could trust them better than my local docs that made all of the errors at the beginning; the Docs at Mayo staged it at T2N2c, IVa. At first they planned on doing the standard Neck Dissection, with that they would have removed most of the lymph nodes on both sides of my neck along with some muscle tissue an maybe some of my tongue and of course the tonsils. Dr. Molina a Medical Oncologist at Mayo stated there had been some studies completed that displayed very promising results from performing a high dose chemo therapy at one session every three weeks using cisplatin, karatone, and 5FU. This would be performed 3 times then I would receive small doses of cisplatin along with seven weeks of radiation and then possibly no surgery. I chose that option so on the first Monday I would get the Cisplatin, Karatone and my pump filled with the 5FU, it was refilled on Wednesday, and wore it until Friday, this went on for only two sessions only because of toleration and results not as favorable as expected after the second session. It was not enough though to get rid of it enough and I went into radiation for 7 weeks with more chemo, with again negative results. Then (minus 70 lbs and the addition of my power port and PEG/ PEJ tube) it was time (May of 2009) for the bilateral neck dissection with removal the the large tumor, my left jugular vein and lots of lymph nodes on both sides, luckily that was all they needed to take out. A little over two weeks ago I had my power port removed, then the second PET scan after surgery and since the first one was clear, and thanks to God this one turned out it was clear also.
Now comes this last week, on Tuesday my Gastro Doc removed my PEG/PEJ with the same feelings most people have when their PEG is removed, some strong pain at first then not too bad. On my way out to the car it hurt a lot more than I thought it should but was so happy to get it out I thought nothing more. Within a few hours the pain got worse and by that evening I started running a low grade fever, we called ER and the ER doc said if the temp gets over 101 come on in. By morning it was still bad so we called the Gastro doc and he stated we need to get to the ER now, the ER x-rays showed air and fluids building in my abdominal cavity. Within the next hour I was in surgery, now all repaired and feeling better I’m sitting at home writing this. As it turned out it was caused by a fluke complication that rarely happens (time to buy a loto ticket) where the abdominal wall separates at the point of the tube entrance and when it is removed the only place for it to drain is into the abdominal cavity.
Today we start our “NEW JOURNY”!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
So to all of my felow suferers; Believe you can make it and after all of the FUN you will.
God Bless you all, Dave