At a Palo Alto hospital yesterday, Mrs. Dweet found out her latest CT scan shows the disease she carries has progressed, but not a lot. Her pulmonary function tests were essentially unchanged from the last time. There is nothing seriously wrong with her bone marrow or blood, although she is manufacturing some strange blood cells. All this is good news. The medication she’s injecting is not working, so she will finish up her current supply and stop. (One can't just return or toss away 60 bottles of precious medication valued at $843 each!)
There is some talk of an aerosol supply of this same med that has worked for some. Her doctor is finding out more about it. He has also prescribed a 6 week pulmonary rehab program that will not clear her lungs, but should make the muscles that work them more efficient. Her doctor still thinks she is qualified for and should receive bariatric surgery. The resultant weight loss should open up the bottom part of her lungs (the section that is now being compressed by extra weight). The Dweet’s will see that particular surgeon next week and ask for his input.
Spiritually speaking, she knows the Lord has given her more opportunities to share her faith because of the ugly oxygen tank she hauls around. Last week at the golf tournament, she really saw that more than ever. She wonders how she can ask that her problems be removed if the Lord is using them in a positive way? So her prayer is that she continues to see and use those opportunities to be a witness, and to remain in the center of His will for her, WHATEVER it is. And that while there, she can truly experience "the peace that passeth understanding."
Thanks to all who have expressed love and concern. Your prayers and thoughts have been an awesome blessing.
Saturday, February 18, 2006
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2 comments:
49er, I was checking your blog several times a week for the longest time, then I finally stopped. So please excuse me for being slow to notice that you had posted some significant information!
I did some quick internet research on PAP so that I could understand the treatments you're describing. Extremely rare is right!
And it sounds like you had a serious setback of your own at one point, dropping sixty pounds! In one of the group homes I worked at, a resident was fed via a J-tube (i.e., liquid food was delivered directly into the jejunum), so I have a little experience with the kind of rehab you're describing.
I'm sorry to hear Mrs. Dweet didn't benefit either from the lavage or the medication. But I'm also relieved to hear the disease has not progressed very much since the last CT scan, and there are other treatment options to explore.
It's so wonderful that you have each other for support during a very trying time. That's the brightest blessing in an otherwise gloomy scenario.
I have a Bible study group on Wednesday evenings, and I will certainly ask the group to pray for you. I could also post a prayer request on Ragged Glory, but I wouldn't do so without your permission. Let me know how you feel about it.
Finally, I think the planned trip to England is a wonderful idea. There's nothing to be gained by sitting at home when you could be fulfilling a dream! God bless your plans.
With heartfelt affection and best wishes for you,
Q.
Q, thank you so much for your comments. Mea Culpa on posting, but I'm trying to improve. Yes, PAP is really a puzzle. As rare as it is, my honey does not respond to any of the "normal" treatment options. And that is extremely puzzling to her doc.
She is quite comfortable with seeking additional prayer support, but she desires it to be along the line of her own personal quest, "So her prayer is that she continues to see and use (-) opportunities to be a witness, and to remain in the center of His will for her, WHATEVER it is. And that while there, she can truly experience 'the peace that passeth understanding.'"
My 'setback' could have been serious, yes, but it all worked out for the best. As of today I have shed 83 pounds (would like to have that amount in Brisish 'pounds', instead), and have about 53 more to lose to reach my goal. My doc is quite pleased.
We are studying now about GMCSF aerosol tests on mice, which to date have been quite promising, and when we see her research doctor again after the London trip it is likely they will accept her into the first human study group for this radical new protocol. Interesting stuff.
Thanks for your kindness. prayers and concern. BTW, googled Tom Wright yesterday and am wrapped up reading his pdf file on "New Perspectives on Paul", from 2003. Great stuff!
Cheers
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