Sam'swifeShirley Posted October 19, 2003 Share Posted October 19, 2003 Hi everybody, I haven't posted much in the last week or two, been sort of busy and worn out. I do read several posts on most days but only write when I think that I really have something to add. Again, I feel the pain of all of those in pain and I celebrate with all of those with good news. And I sincerely thank all of you for your continuing thoughts and prayers. We got my only daughter married off in Charleston, SC last weekend and I was able to do all the Father of the Bride stuff. When she announced her plans last winter, I wasn't sure I'd be there but through the grace and mercy of God I did. It was a relatively small but beautiful wedding. Shirley and I had planned to rent an SUV for the trip to haul all of my oxygen paraphernalia but the weekend before, we decided, what the heck, and just bought one. So now I can't die for four more years. I have filed for my disability insurance and requested a LOA from medical practice at work. I'm planning to do some part-time computer software consulting at work to maintain my insurance coverage, maybe 20 hr/wk, as soon as I can. I'm two weeks into a six week course of radiation to my right supraclavicular area where the cancerous node was removed in June and hope for few or no complications from that. I've refined my current diagnosis to "chronic necrotizing aspergillosis", the rarest kind. I made that diagnosis myself, as I'm not sure my pulmonologist has heard of it. The treatment I'm on now is correct, Vfend. Actually, I’m on higher than the recommended dose but it shouldn’t hurt me. I think I may be seeing some improvement after two weeks. I'll probably take it for at least twelve weeks. My cough and bronchorrhea (a fancy medical word for excessive sputum production) are not gone but seem to be better and my energy level is up a bit. My oxygen requirement is about the same. I've given up on the idea of getting off of the oxygen unless maybe I have a lung transplant down the road, but who knows. I'm coming up on 18 months since my original diagnosis and I'm still standing and still fighting! God bless us all. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted October 19, 2003 Share Posted October 19, 2003 Good to hear from you, Sam. Glad you got to do the wedding thing and that it went well. Blessings. Don Quote Link to comment Share on other sites More sharing options...
bobmc Posted October 19, 2003 Share Posted October 19, 2003 Hey Sam; May God continue to bless ya, Happy for the wedding and may you continue to inspire us. way to go!! God bless and be well Bobmc- NSCLC- stage IIB- left pneumonectomy- 5/2/01 " absolutely insist on enjoying life today!" Quote Link to comment Share on other sites More sharing options...
Donna G Posted October 19, 2003 Share Posted October 19, 2003 How lovely , Charleston is so lovely this time of year. When Jay was in the Navy he was aboard the Jesse L Brown, it was stationed there so so were we. Loved the Octoberfest, The lancing Tournament. While there I worked downtown at Roper Hospital. So glad you were able to meet all your responsiblities for the blushing bride. Thanks for keeping us posted on how you are doing. Donna G Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted October 19, 2003 Share Posted October 19, 2003 Sam Good to hear from you. We just married my son off in Sept. in Charlotte NC. Wonderful area out there. You keep fighting, the highway is awaiting! Quote Link to comment Share on other sites More sharing options...
Guest Posted October 20, 2003 Share Posted October 20, 2003 Sam: The wedding?! Wow. Just great. Ans Bless You. I think of you more often than you could possibly imagine. Thank you for everything. I love you. -Deb Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted October 20, 2003 Share Posted October 20, 2003 God loves you Sam! Keep on fighting and inspiring all of us. Great news about the wedding. Sounds like the consulting will be good for you if you can do it from home. I don't know what I would do without my home business, I can work when I feel like and not when I don't but at least it keeps my mind occupied and keeps those checks coming in which always uplifts your spirits. Just to be a contributing member of society when you have this horrible disease 24/7 makes me feel like less of a patient and more in control of my destiny even if I'm not. I have said it before but I sincerely think attitude is half the battle. Bess B Quote Link to comment Share on other sites More sharing options...
mirrell Posted October 20, 2003 Share Posted October 20, 2003 sam, you are so very special. mirrelll Quote Link to comment Share on other sites More sharing options...
lynn Posted October 20, 2003 Share Posted October 20, 2003 Sam Congratulations on the wedding! Hope you are feeling better soon. 18 months is great...keep on hanging in there! God bless, Lynn Quote Link to comment Share on other sites More sharing options...
Guest Posted October 20, 2003 Share Posted October 20, 2003 Praying for more great times ahead for you. Love, Katieb Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted October 21, 2003 Share Posted October 21, 2003 Sam, So glad to see your post "Father of the Bride"!!!!!!!!! Blessings to you, Peg Quote Link to comment Share on other sites More sharing options...
stephnewyork34 Posted October 21, 2003 Share Posted October 21, 2003 Sam great to hear things are going well! and congrats to your daughter. Quote Link to comment Share on other sites More sharing options...
SandyS Posted October 21, 2003 Share Posted October 21, 2003 Sam! Glad you fell at the top of my list to view (I haven't been on in a while, so it's a pretty long list)! Although I usually scroll thru to look for you anyway! Glad to hear your daughters wedding went well - I'm sure it meant the world to her that you were there and able to share in her special day. I hope you fair better with this radiation than you did with your last round....think about you often! Give your wife a hug and take her for a cruise in those new wheels! Hugs and prayers, Sandy Quote Link to comment Share on other sites More sharing options...
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