Nov 20, 2013 - 9:24 pm
Hello my fellow Warriors and Warriorettes,
It's been a while since I posted on the boards. I've popped in now and again to read a few posts and see how you all are doing but my time on the boards has been limited. This was self imposed as I needed to do so for my mental health. While my attitude is positive I found seeing some of my fellow H&N friends hurting, so many new members and recurrances was getting me down. Please know that you all have been and remain in my thoughts and prayers.
It's hard to believe but tomorrow is the one year anniversary of my diagnosis. An entire year of my life dedicated to beating Jack. I'm 7 months post treatment and all in all, I'm doing well. I have some nagging side effects including neuropathy in my feet along with RLS, nerve issues persisting from the neck dissection and a bit of lyphedema as well. I've been put on Neurontin again to help with the nerve issues and pain which is annoying as hell to be honest. I get lots of muscle twitches too. Hopefully the Neurontin will help. The general aches and pains are handled with OTC remedies and I have Tramadol for the days it gets bad. Swallowing is still challenging but there is some improvement. It's still chew, chew sip swallow but my swallow study was very encouraging. Fatigue is still an issue and it looks like my thyroid has probably been affected. As of now they're keeping an eye on things but I fully expect to be on Synthroid within a year. I've started to practice my music again and working on my voice. My voice sounds a bit different as my oral cavity has changed and stamina is an issue. As my SLP said, think of it like a marathon runner that hasn't run a race in a year. She encouraged me to practice daily at this point. I won't know for a while longer the full effect treatment but I'm encouraged so far. My goal is to be ready to perform again my the end of March next year when the lodges in the Shenandoah National Park open. Those are my "bread and butter" gigs and management is ready when I am :)
Yesterday was my second 3 month check up. I was at Johns Hopkins from morning till late afternoon. I was scoped, poked, prodded and stuck and I'm still officially NED! My team was pleased with where I'm at. I've gained 15 pounds since treatment ended (officially 182lbs up from 167). They said that's perfect and not to gain any more ;) That means the days of ice cream and BLTs are limited from now on ;) I never did lose my taste and I'm at 100% although spicy is still out. Saliva is at about 80% albeit thicker than before. I still have about 6 months before I'll hit what will be considered my "new normal. They said that some experience improvement up to two years but to pretty much gauge it at 1 year.
Overall, things are Ok. I've been back to work full time for a while now and while I'm pretty beat at the end of the day, I'm managing well. Marcia and I are stronger together than ever and are looking forward to the future together. Socrates celebrated his 3 year birthday on Monday and he's as loving, funny and goofy as ever. He's laying in my lap as I type, purring away :)
I hope you all are doing well and it's nice to see so many of you still on the boards. I extend my heartfelt thanks to everyone. I don't know how I would have navigated the waters of head and neck cancer without your help and encouragement. I'll continue to pop in and check on you. Who knows, maybe even throw out a few posts and words of wisdom ;)
Positive thoughts and prayers to everyone. Continue to fight the good fight and kick Jack's ass!