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Sam is still here.


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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.

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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

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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

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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,


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