Jan 15, 2013 - 9:12 pm
OK, well, since DrMary broke the silence with a posting about Vitamins and people ask about us, let me tell you. I have about a half hour before I have to pack up and go play hockey so that should give you an indication of how things are.
First, for you new folks, I was HPV+ STC tonsil and lymph node. I am just past two years out of rads and chemo and just less than two years out of a clean-up neck dissection that took 26 lymph nodes. They did a tonsillectomy to start.
On the whole, everything is WONDERFUL. My scans have all been clean and after the last one my rad onc said he didn’t want to see me until May. It won’t be long before every 6 months goes to every year, I hope. It took a bit but I gained back all 45+ pounds I lost and, if anything, am in better shape and more muscular than before. I play hockey 3-4 times a week and, where the first year back was only to Mexico for work, last year included Africa and Brazil and Colombia and I forget where else. My wonderful wife, Mary, massages the neck scar every day with vitamin E oil and I have to stretch and point it out or no one would know; I had a master surgeon. The massages also make sure that the drainage has found its new paths as the first months were lots of edema.
Mary’s picture on her DrMary posts was from two years ago and I have gained since then and she is much fitter and stronger now. She is doing Tae Kwon Do now (son and daughter both black belts) and doing physical things she never thought possible. She is great. Perhaps she will change her pic to the latest one. I hope so as she looks great.
On the other hand, there is never a minute when I don’t know I had cancer. I can work at the computer without difficulty but still need water to speak at length or to eat – yes, I still “foobricate”! Playing hockey is OK because I get enough breaks to take a squirt every couple of minutes but I played soccer in Brazil and was just dying of parched mouth after five minutes of running. I will send a link to a TV talk show (!) I was on and a speech I gave recently. It was a little like the Marx Bros in Night at the Opera.
It has been 2 ½ years since I had a meal that I could just eat without any thinking or eat quickly. Mary is still an angel and makes food that is easy to eat and she and my son (and the others when they visit) still wait patiently for me. Lately it seems that I have gone backward a bit in my ability to swallow and this is troubling. I have promised to see the Dr and a physical therapist. I have also been having increasing neck muscle spasms. Before it was only really painful if I did sit-ups or similar but lately it has just gone into spasm when I twisted or held it badly. Believe me, not having complete mobility in your neck is not a good thing for a hockey goalie! At first I thought it was due to the neck dissection but now wonder if it wasn't the rads. By the way, teeth are perfect but it is frequent brushing and fluroide trays at night - without fail! The tinnitus is also pretty annoying but, while the med onc thinks that acupuncture might help the dry mouth, he thinks there is nothing to do about the ringing. He apologizes since it was likely his cisplatin that did it but those are the chances you take. If it boosted the chances of cure by another 10-20% or whatever, that was a gamble worth taking. But I love classical music and between that and the central air whoosh I can put up with the tinnitus.
KTeacher, I have offered any number of times here with my docs when they say they have another patient who is not doing well. I send my number and caringbridge info (dougiebaker) and such but the takers have been few. I do wish I could help more. They do say that they use me/us as an example of just how bad it can get (which was pretty bad) and how good it can come back to. Whenever I talk to new people I always say that the great thing is that, barring unusual complications, you are going to survive this, the bad thing is that you are going to have to walk through he** to get there.
Anyway, this is perhaps more than anyone wanted to hear but there it is. If you happen to be coming here for the inauguration, please come stay with us. We are on the metro line in to DC. We both send our new year’s greetings and our biggest hugs to everyone. Doug (Goalie)