I think there are many reasons why I hadn't blogged recently. One of the main reasons is it starts to sound like moaning session, despite the fact that I minimize the bad (really, I do).
Okay, so last visit to the NIH was horrendous. The PET scan continues to be negative. They were nonchalant about that, as they have felt all along it wouldn't come back. With all the things that happened to Jim though, they want to make sure a new cancer isn't lurking. They don't worry, but there are statistics. Despite that good news, it's not long on the heels of that, that we have another test with another story. Long story short, Jim's lungs continue to decline (ignore my previous point about them doing good.) I guess I should have said, he hasn't had bronchitis. So, his breathing test shows one area of his bronch test has declined 18 percent. They want Jim to be in another trial. They have had success with it. And it's only a pill with no real side effects. They really want us to do it. The doc says, "You think you have a poor quality of life now. It gets worse when you can't breathe." Geeze, thanks Doc. No kidding. The only problem is Jim having to go into the hospital for 3 days and us drive down there every month afterwards. I don't want to (but I would) and Jim doesn't think he can. It's so weird. There have been a few trips, where Jim would drive THE WHOLE WAY DOWN. But then, there's those other trips. This was one of those "other" trips. He had muscle cramps and pain so bad...well, forget the details. The doc suggested also that Jim may have GVHD of the muscles and nerves. So, it continues. He has been in extreme pain ever since our trip down. Please pray for him.
I'm tired, but I'm okay.
1 Corinthians (something or other) We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body.
I'm not so certain I reveal it as I would like to do so, so pray for me that I do, as the hard times continue as we begin year 5 of this journey.
4 comments:
wow.........let me say it backwards....wow. Thank you for posting, even though it is hard. It really helps us know how to direct our prayers.
Happy Birthday this week! If you think you would ever like to go to the Christy House sometime for lunch, let me know, and you will be my guest. Or if there is another place you would like to go, let me know.
Praying and never ceasing,
Judy and Tom
G&J>
Infatuation and love are words often used in the same breath.
Well I think I must be infatuated with you two wonderful people. Then again it could be love. Reason is I check in every couple of days to see what's happening, to see who's offering to help, and see how the health issues are being managed.
I deal with hundreds of people in a support group and most have major issues to deal with. However, Jim & Gloria, I don't deal with anyone else who has fought the good fight as well as the two of you. As I've often said you give me strength.
My wish and hope is that my love and infatuation gives you strength too. Seems odd when we've never met, but, from the early days we shared the traumas of it all.
I should tell you that a few months ago NORD the USA's National Organization for Rare Diseases (assoc with the NIH)took my support group on board and created a formal link ... funny, I'm now on record in the US health system. Next thing I suspect is they'll offer one of those green cards for me to do a national tour !!! (only joking yitz)
Dispensing Luv from Dr Gazza
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