Hi Everyone:
We are home. It kind of was a funny trip. I took Jim...or should I say, he took me. He ended up driving, I ended up sleeping. My ID was expired, and I had to go through customs again. And then my driving license is expired. They didn't catch it though. Was glad. But it made me think twice about their "very strict" security. Your almost stripped searched and yet I can get through with an expired driver's license. Maybe Mr. President doesn't have a birth certificate after all. Hmmmm.
Anyway, the PET SCAN IS CLEAR....Nothing showing up. Still cancer free. Jim was a bit worried with the extra pain, but I think it was just a clear case of scanaphobia. Anyway, praise the Lord.
I enjoyed reading your responses to the blog. Thanks for them.
We are also home from Passavant. Jim's CK numbers are up pretty high. (found that out at the NIH.) That can be heart or it can be muscle problems. He has been having tons of muscle spasms, anyway, they told Jim to check it out with the doc at home. normal is 20 to 70, and his is 780. Yesterday he was having chest pain, and he broke out in a sweat again. That's been happening lately, too. So off to the hospital to make sure the heart was okay. And his enzymes were still up, but the EKG was okay, so, they released him.
Jim's pain is still doing good. Pain level 6 feels great after a level 10, but after 2 weeks, a 6 is still a 6, and Jim still needs more comfort, but so far this is where the Lord has him, so that's what we are going with.
I'm tired. Going back to bed for the 3rd time this morning. Going to St. Mattress this sunday with Jim.
Love to you all
Sunday, February 27, 2011
Wednesday, February 16, 2011
Wonder of wonder, miracles of miracles
Okay, you win nothing for knowing what musical that song is from. :)
Well, today for me is a day of wonder and miracles.
First, Jim IS DOING BETTER. He has been on the beta glucan now for 5 days, and yesterday he went to lunch with 2 friends (that is a miracle in itself, even if he was 100 percent better, but that's another story) and then he went to Costco....WITHOUT ME. He came home beat, but the point is, HE CAN SIT. HIS PAIN LEVEL IS BACK TO A 6. Praise the Lord. Funny how if he ever started out at a pain level 6, he would feel like death, but to get back to a level 6 is WONDERFUL.
3 days after he started the supplements, we went to Ikea (shut up Gaz) and was there 3 hours. 3 hours....3 hours, can you hear this???? And then we went to Steak and Shake, and Jim felt so good that he got up and ran around the restaurant. DID YOU HEAR THAT. Ran. He didn't walk like a gimp, either. And then he drove home. Why? BECAUSE I WAS BEAT. He wore me out.
So, as it stands, here is the good news:
Oh, wait. Here is the other miracle. Several years ago, we had to get a whole new boiler system that Jim installed. This was before he got cancer. Anyway, our gas bill the first year never went down. We were still paying 400.00 a month in the winter. (200.00 a month budget) and we were still cold, having to keep it turned down. Jim got cancer that winter and never was able to give our new system much attention. This year he did. We were both tired of being cold, so we turned the heat up. Too bad. He played with some doodads on the system and we have been warm all winter AND our new budget is 71.00 a month. That's almost a bigger miracle than anything.
Anyway, thanks for hanging in there waiting to hear. I'm glad I was able to share some good news with you all.
Well, today for me is a day of wonder and miracles.
First, Jim IS DOING BETTER. He has been on the beta glucan now for 5 days, and yesterday he went to lunch with 2 friends (that is a miracle in itself, even if he was 100 percent better, but that's another story) and then he went to Costco....WITHOUT ME. He came home beat, but the point is, HE CAN SIT. HIS PAIN LEVEL IS BACK TO A 6. Praise the Lord. Funny how if he ever started out at a pain level 6, he would feel like death, but to get back to a level 6 is WONDERFUL.
3 days after he started the supplements, we went to Ikea (shut up Gaz) and was there 3 hours. 3 hours....3 hours, can you hear this???? And then we went to Steak and Shake, and Jim felt so good that he got up and ran around the restaurant. DID YOU HEAR THAT. Ran. He didn't walk like a gimp, either. And then he drove home. Why? BECAUSE I WAS BEAT. He wore me out.
So, as it stands, here is the good news:
- Jim is on 30 mgs of methadone a day and holding. (he can't go up because it shuts other things down)
- He is now able to sit better than he was. Still needs a bit more sitting power.
- He is smiling.
- He is back to a level 6 pain
- He feels more hope in his ability to enjoy each day that the Lord gives him.
- His bros and sis's are coming over this weekend and he's excited rather than fearful.
- We have to go to the NIH next week.
- Jim is addicted speakers, receivers, and other multi-media sound equipment.
Oh, wait. Here is the other miracle. Several years ago, we had to get a whole new boiler system that Jim installed. This was before he got cancer. Anyway, our gas bill the first year never went down. We were still paying 400.00 a month in the winter. (200.00 a month budget) and we were still cold, having to keep it turned down. Jim got cancer that winter and never was able to give our new system much attention. This year he did. We were both tired of being cold, so we turned the heat up. Too bad. He played with some doodads on the system and we have been warm all winter AND our new budget is 71.00 a month. That's almost a bigger miracle than anything.
Anyway, thanks for hanging in there waiting to hear. I'm glad I was able to share some good news with you all.
Tuesday, February 8, 2011
Giant Eagle Coupon
In the mail last week, in the Giant Eagle Flyer, there was a 1.00 off per gallon of fuel coupon for new or transferred prescriptions. If you or anyone you know has the coupon and are not using it, could you send it my way. I could save a billion dollars on gas. :)
Thanks.
PS. NO CANCER FOR JUDY. Thank you Lord. One taken, one spared, and one spared and in pain. I don't understand your ways, but then again, you told us that we wouldn't in your word now, didn't you? We thank you for all three situations. But the Judy one sure feels good.
Thanks.
PS. NO CANCER FOR JUDY. Thank you Lord. One taken, one spared, and one spared and in pain. I don't understand your ways, but then again, you told us that we wouldn't in your word now, didn't you? We thank you for all three situations. But the Judy one sure feels good.
Monday, February 7, 2011
A VERY hopeful thing happened
Hi Everyone:
Thanks for the encouragement that you post as responses to me. It lifts me up, folks.
So, yeah, Gary from Australia is dry and safe and so far Judy does NOT have cancer. Test are not all in, but so far so good. (We keep praying Jude)
Now that you sit on the edge of the seat waiting to hear of the hopeful thing, here it is. I"ll give it to you short.
We continually try to figure out what is it that makes Jim's pain good or bad. I have been wanting him to go off of all the extra meds and in thinking of that, it seemed to me that Jim's pain has continually got worse since we got home from Israel. So what could that be? So I thought some more. Jim brother had bought him some very expensive supplement for Jim to take prior to our trip to Israel. Jim took it. And we busied ourselves with getting ready for the trip. The weird thing is that it was a supplement that boosts the immune system. Well, we take vitamin C, and Jim was taking an expensive Cell Forte inositol with maritake mushroom thing that boosts the immune system, but basically he stopped taking it because what does that have to do with the pain. It's always recommended for people with cancer, and I'm thinking that's why brother dear bought it. But anyway, it seemed to me that since Jim stopped taking it, his pain got worse. But Jim didn't think that was the case. But he did find some extra pills that he had left over and he started taking them, and what do you know, but his pain continued to lessen. And while it was still there, it was bearable, compared to how it can get. Was it coincidence??? Well, after a week he ran out, and the pain has got continually worse. So, it seems that what I noticed may be true. So I looked up more info on this supplement, and while the Cell Forte is good, nothing is quite as good as this Transfer Point Beta Glucan. It also states that it's the fastest working beta glucan on the market, and this lines up with what Jim was experiencing.
That is exciting, but this is even more so. We still don't understand what beta glucan could do about pain, but we always ALWAYS saw that after the stem cell transplant, when Jim was put on immune suppressants to supress the GVHD or the cancer, his pain ALWAYS GOT WORSE, extremely so. So much that he had to go off the supressents. And Jim remembers saying, "Geeze, if they could make a pill that does the opposite, like an immune system booster. DAHHHHHH. That's what this beta glucan 3-1, 6-1 is. But particularly this brand that Jim's brother researched and found (WTG, BILL....) This is truely the only thing that has showed some promise. Needless to say we ordered some immediately, and even went to GNC to get some in the meantime. The NOW brand is the second best to the Transfer Point, but....it's better than nothing. Some beta glucan, even brands touted as "the best" off less true BG than saline solution. So that was very good research Bill.
We are very very VERY VERY VERY EXCITED about this.
The "possible" problem is that if Jim's immune system is boosted, could that mean the GVHD possibility would be boosted as well? We don't know. Jim's willing to take a chance, but here's the thing. The whole time Jim was on it, and was able to ready himself for a trip around the world, he never got bronchitis or anything. It wasn't until he went off it, at the time of the trip, that he got bronchitis. He lungs were impaired before going on the BG, but didn't get worse while on it, so, I'm not worried about that.
As for the boosting of the immune system possibly boosting any cancer cells, well, you know, we all just don't know. But we know this. Jim CAN'T live in that pain anymore, and there is nothing that can be done, so we are going with this.
I hope that makes sense to everyone. This is very exciting for us. Stay tuned. What Jim wouldn't give for that old constant level 6 pain again. Yeah, he won't be able to work or throw out the Methadone, but he can smile at least and have some hope.
Us
Thanks for the encouragement that you post as responses to me. It lifts me up, folks.
So, yeah, Gary from Australia is dry and safe and so far Judy does NOT have cancer. Test are not all in, but so far so good. (We keep praying Jude)
Now that you sit on the edge of the seat waiting to hear of the hopeful thing, here it is. I"ll give it to you short.
We continually try to figure out what is it that makes Jim's pain good or bad. I have been wanting him to go off of all the extra meds and in thinking of that, it seemed to me that Jim's pain has continually got worse since we got home from Israel. So what could that be? So I thought some more. Jim brother had bought him some very expensive supplement for Jim to take prior to our trip to Israel. Jim took it. And we busied ourselves with getting ready for the trip. The weird thing is that it was a supplement that boosts the immune system. Well, we take vitamin C, and Jim was taking an expensive Cell Forte inositol with maritake mushroom thing that boosts the immune system, but basically he stopped taking it because what does that have to do with the pain. It's always recommended for people with cancer, and I'm thinking that's why brother dear bought it. But anyway, it seemed to me that since Jim stopped taking it, his pain got worse. But Jim didn't think that was the case. But he did find some extra pills that he had left over and he started taking them, and what do you know, but his pain continued to lessen. And while it was still there, it was bearable, compared to how it can get. Was it coincidence??? Well, after a week he ran out, and the pain has got continually worse. So, it seems that what I noticed may be true. So I looked up more info on this supplement, and while the Cell Forte is good, nothing is quite as good as this Transfer Point Beta Glucan. It also states that it's the fastest working beta glucan on the market, and this lines up with what Jim was experiencing.
That is exciting, but this is even more so. We still don't understand what beta glucan could do about pain, but we always ALWAYS saw that after the stem cell transplant, when Jim was put on immune suppressants to supress the GVHD or the cancer, his pain ALWAYS GOT WORSE, extremely so. So much that he had to go off the supressents. And Jim remembers saying, "Geeze, if they could make a pill that does the opposite, like an immune system booster. DAHHHHHH. That's what this beta glucan 3-1, 6-1 is. But particularly this brand that Jim's brother researched and found (WTG, BILL....) This is truely the only thing that has showed some promise. Needless to say we ordered some immediately, and even went to GNC to get some in the meantime. The NOW brand is the second best to the Transfer Point, but....it's better than nothing. Some beta glucan, even brands touted as "the best" off less true BG than saline solution. So that was very good research Bill.
We are very very VERY VERY VERY EXCITED about this.
The "possible" problem is that if Jim's immune system is boosted, could that mean the GVHD possibility would be boosted as well? We don't know. Jim's willing to take a chance, but here's the thing. The whole time Jim was on it, and was able to ready himself for a trip around the world, he never got bronchitis or anything. It wasn't until he went off it, at the time of the trip, that he got bronchitis. He lungs were impaired before going on the BG, but didn't get worse while on it, so, I'm not worried about that.
As for the boosting of the immune system possibly boosting any cancer cells, well, you know, we all just don't know. But we know this. Jim CAN'T live in that pain anymore, and there is nothing that can be done, so we are going with this.
I hope that makes sense to everyone. This is very exciting for us. Stay tuned. What Jim wouldn't give for that old constant level 6 pain again. Yeah, he won't be able to work or throw out the Methadone, but he can smile at least and have some hope.
Us
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