december’s Story

Site created on August 26, 2011

Hey guys, this is it.

I hope this site will get us all through the next few months!
In June of this year I was diagnosed with Stage IV melanoma that had metastasized to both of my lungs; I have 4small nodules at this time.  Presently, there is no cure for melanoma, but if I am lucky enough to be in the 15 to 20% of the population that responds favorably to the melanoma drugs, it will slow the metastasis of the cancer.






I will be admitted Mon, 08/29 to Johns Hopkins University Hospital (JHUH), first to place my double lumen cath and then to begin   Interleukin 2 (IL2)




Newest Update

Journal entry by december hughes

I have just returned from Tampa, which has been an experience on crutches! It is interesting to me that people either go out of their way to be helpful (open doors, ask to carry things, etc.,) or just absolutely ignore you (doors close in your face, elevators not held, etc.). I stayed with Mike and Barbara and practically had to fight her to to let me do anything on my own as Barb is very thoughtful and kind.

I met my new Moffitt doc, Dr. Ksushalani (Dr. K), who seems nice and very competent, so I am relieved to have him in FL if the need ever arises while we are down there or if I would ever need to be in another trial.

The good news is that my scans continue to remain stable, no growth, changes or spread, for which I am thankful, sending praises up to the heavens for these continued blessings. There will be one more scan in three months and then I should be able to extend the time to every four or six months- a relief to me because of drinking the crappy barium shakes.

I weaned down to 10mg of prednisone last Friday and I am doing fine but I absolutely feel my broken ankle aching more, but that's what the prescription NSIDs are for. I talked with Dr. K about weaning as the rheumatologist said that after 10mg, I needed to go to 5mg, then 2.5mg, then 1, which is: a) crazy and, b) too long. Dr. K said that after four weeks on 10, wean to 5mg for two to three weeks, then stop. This will keep me in the six month range that Dr. Gibney said was important to keep the efficacy of the cancer drug (Nivolumbab) intact.

Bob came over last Sunday and graciously put up the skeletons (6 more, Deb put up 1 last week); he had volunteered because he thought it would be fun, ha! He was rapidly disabused of this notion, but he gets a huge thanks from me as neither John nor I would have been able to accomplish this- 20 feet up on an extension ladder is not in my safe zone! Based on his enjoyment of the activity, they might still be up there at Christmas! I tried to tell him beforehand that putting up the skeletons is not fun, involves trial and error and many changes in positioning of said skeletons and is generally a pain, but the end results produce great feelings of satisfaction! He is (as am I) Very pleased with the results and thinks the decor merits a photo in any of the local papers (agreed). John even said that while I was in FL he turned the lights on at night, something he has declined to do in the past when I am not at home. Enjoy the photos and I will post our Sea Witch photos after the event. We will be rockingly scary!

Stay well my friends,

Live well my friends,
Love
Me
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