what a day !

Skiffin16 said:

Will Be Thinking of All of You
I definitely will be thinking of all of you here...and a few not.

My buddy GlennaM unfortunately lost the battle early this year...we spoke often of trying to have a SGI Beach Get Together with a few of my Abi-Normal Sisters, she is missed.

I of course all ready have some casual plans on possibly meeting up with a fishing buds on the various fishing/boating forums I belong.

But if nothing else, I can always find my way around the water,

I wish I had an extra day really... The day we leave there is a Art & Seafood Festival in Appalachicola.

But you can rest assured that I'll be posting a few photos....

I usually send a few to my co-workers back in the office just to rub it in.... I make sure it's usually a bust time of the day, just to make it hurt extra special, LOL...

BTW, thoughts and prayers for your son..., how is he doing?

Best,
John

John(Skiffin) Thanks for caring, sharing, and asking
My son is doing well considering the brutality of the treatments. He completed the 7 weeks of rad/chemo on Sept. 7th. His post treatment PET scan is scheduled for Friday (end of this week). He is impatient for the PEG and PORT to be removed so that he can try to get back in shape for the ski season. He is eating fairly well now with only minor taste bud distortions and the usual difficulty with bread being harder to swallow than other foods. His salivary glands seem to be functioning normally, too. I credit the MuGard for how well he tolerated much of the treatment. He did have some pain when swallowing, but no mouth sores. The skin on his neck was not seriously burned either, probably because he slathered on the Medline Remedy Skin Repair Cream that his radiation oncologist told him to use every day. He did not lose any weight during treatment because the wonderful nurses at the radiation oncology office were adamant that he maintain his nutritional status and weighed him every day and pushed him when he needed their gentle but firm nagging (they could nag when mom couldn't). During weeks 6 & 7 and for 2 weeks post treatment, he used the PEG with Jevity because everything by mouth tasted like metal and he had no appetite for food along with discomfort when swallowing. But he is no longer using the PEG and is truly enjoying real food again. Everything (except chocolate) seems to taste good now although there are still many foods that he ate before dx that he has not yet tried post tx. The post-treatment problem he continues to have is with the buildup of mucus deep in his throat which causes him to cough a lot when he tries to sleep so he is a bit sleep-deprived. Sleeping has taken an odd pattern. He has insomnia until about 2am and reads until he manages to drift off to sleep but then begins to have uncontrollable coughing episodes every hour or two until about 6am when he finally falls into a deep exhausted sleep from which he does not awake until about noon. He does not nap during the day and rarely coughs while he is awake. He does go for long walks (several miles) to exercise. Hopefully, this 'coughing while trying to sleep' problem will resolve over time. He seems to have had an easier go of it than many who post on here. As a mom/caregiver, I am very grateful that, so far, he has been spared some of the extreme misery that many have had to suffer. My heartfelt sympathy and admiration is with those who have experienced the worst of this terrible disease and confront it so bravely. The posters on this forum have been an inspiration and source of hope when I needed it most. Words are not adequate to express my gratitude for all of you who post your words of wisdom, experience, encouragement, and compassion here. I sincerely thank each and everyone of you. I plan to return to Alligator Point after my son's PET scan results and subsequent doctor visits are completed by the end of Oct. We have no way of knowing what the future holds, but the fact that so many survivors are still here and enjoying life is comforting for those of us who are new riders on 'the bus'. Thanks for caring, sharing, and asking.

Good time had by all
Thanks for starting this fun thread, Dan. Adding my best wishes that you enjoy at least another 47 happy birthday celebrations surrounded by loving family and friends. It has been delightful reading all the posts by everyone sharing the good times they had this past weekend. Yay for Tiki bars with beer and fishing with buddies and pumpkin patches with kids ... Yay for all of you with the determination to survive and embrace life in all its definitions of normal.