Hello:
Well, they put Jim on steroids for his gout, and he's actually walking without the cane the second half of the day. I think it was the prayers. I've never seen steroids act that fast. But we'll take it.
DRUM ROLL.......................
Jim is 100 percent grafted. That means none of Jim's T-cells are actually Jim's. They are all Bob's now. So, his white blood cells are up a bit more today. His red blood cells are a bit up, and again, the platelets, the last thing to respond, are up a few more points from last Thursday. This means that Jim will not lose his graft, and that he now has an immune system capable of fighting off some small things right now. It will never be 100 percent, but his immune systed is bouncing back, and if he continues in this direction, we may actually be coming home at the end of May. Now, I say this tongue in cheek, cause I'm just used to things coming up. But this is some of the best news (other than cancer free) that we have gotten in a long time.
I haven't asked the doctors or anything, but since Jim's cancer was a T-cell cancer, and all of Jim's T-cells are actually now Bob's, and he still doesn't have cancer, what does that mean in regards to the cancer coming back and stuff. Not that I'm relying on doctors words or anything. But you know what I mean.
Anyway, isn't that exciting? Jim's GVHD is a bit better with the meds, too. The steroids will help this as well.
Jim wore a mask the entire time at the NIH cause of the Swine flu. Let's not even go there.
Monday, April 27, 2009
Saturday, April 25, 2009
no news is same news
Hi Folks:
Well, it's hot today and Bob is opening up his pool. I hope it warms up enough for me to swim in before we leave. (I'm still hoping for end of May.)
I miss home so badly. Except for the few days home in January, which were entirely stressful, we haven't been home in over 5 months. My sister has sent me a few pics of things blooming in the yard. I miss selling perennials on my table out in the front yard and talking with the fellow gardeners who stop and chat occassionally. I miss church. I miss many things and people.
Going home scares me though too, because not only do I still have hour to hour care with Jim, I will then have to shop, cook, clean, landscape, exercise, try to find someone to repair the chimneys, dust and clean 5 months of dirt...and go to my doctor.
I'm falling apart. My back hurts from pushing unfriendly wheelchairs around all day. I think I'm at the end of my ability to live out of a suitcase and handle the stress of all of this. After 10 years of freedom from exzema on my hands, it's back, and I have no cream. It's from nerves. My nails are slivers. My stomach is in constant pain. I'm not sure if I am developing colon problems or an ulcer. It hurts badly. I can't find my smile very often, either. Oh, it's there on the outside, but it's not there on the inside all the time. I miss that. I hope that comes back. I LOVE LAUGHING AND CUTTING UP.
I have been having some great God time, and that is really cool. It's funny how people equate good time with the Lord with being happy. Not so, but I don't want to get into that. I continue to learn to be less selfish and more loving, and yet it's surprising how far I have to go.
Jim is the same in weird ways. The rib is feeling better, but then the gout is back and there's another thing to make it difficult for him to walk. The GVHD is getting pretty bad on his face. It's peeling like a lizard. I have cream that I put on his face, neck and back and chest. The immune suppressing drug that he is on needs to be regulated better, so he's up and down on the meds. I'm still giving him neupogin shots. His platelet numbers are a little better, but then the kidney numbers go bad. He's still retaining water, and he's tired most of the time. He's lost his smile, too. And he's only ever had one on the inside. (when something is really funny and he doesn't laugh, I ask him why he doesn't think it's funny and he says that it is funny. I say, "you're not laughing," and he says, "I'm laughing on the inside." ) So he's not laughing or smiling on the inside.
We did go to a few garage sale today. That was Jim's idea. He wanted to do anything but lay around. It's hard for him to get in and out of the car with the walker, so used his cane. It totally wore him out and he is sawing logs. I didn't get much. I couldn't resist a never used noodle maker for 3 bucks, so I could swell it in on Ebay for 50, but Shelley doesn't have one, so now she does. :) That was fun to bless her with after all her cooking for us. (and if we get homemade noodles from her some day, well, what do you know. :) )
Well, I'm going to go for now. Continue to pray for my dear husband. He needs a total healing of body, mind and spirit. Heck, so do I.
Us
PS. For a funny story, call Bruce. ;) Thanks Bruce.
Well, it's hot today and Bob is opening up his pool. I hope it warms up enough for me to swim in before we leave. (I'm still hoping for end of May.)
I miss home so badly. Except for the few days home in January, which were entirely stressful, we haven't been home in over 5 months. My sister has sent me a few pics of things blooming in the yard. I miss selling perennials on my table out in the front yard and talking with the fellow gardeners who stop and chat occassionally. I miss church. I miss many things and people.
Going home scares me though too, because not only do I still have hour to hour care with Jim, I will then have to shop, cook, clean, landscape, exercise, try to find someone to repair the chimneys, dust and clean 5 months of dirt...and go to my doctor.
I'm falling apart. My back hurts from pushing unfriendly wheelchairs around all day. I think I'm at the end of my ability to live out of a suitcase and handle the stress of all of this. After 10 years of freedom from exzema on my hands, it's back, and I have no cream. It's from nerves. My nails are slivers. My stomach is in constant pain. I'm not sure if I am developing colon problems or an ulcer. It hurts badly. I can't find my smile very often, either. Oh, it's there on the outside, but it's not there on the inside all the time. I miss that. I hope that comes back. I LOVE LAUGHING AND CUTTING UP.
I have been having some great God time, and that is really cool. It's funny how people equate good time with the Lord with being happy. Not so, but I don't want to get into that. I continue to learn to be less selfish and more loving, and yet it's surprising how far I have to go.
Jim is the same in weird ways. The rib is feeling better, but then the gout is back and there's another thing to make it difficult for him to walk. The GVHD is getting pretty bad on his face. It's peeling like a lizard. I have cream that I put on his face, neck and back and chest. The immune suppressing drug that he is on needs to be regulated better, so he's up and down on the meds. I'm still giving him neupogin shots. His platelet numbers are a little better, but then the kidney numbers go bad. He's still retaining water, and he's tired most of the time. He's lost his smile, too. And he's only ever had one on the inside. (when something is really funny and he doesn't laugh, I ask him why he doesn't think it's funny and he says that it is funny. I say, "you're not laughing," and he says, "I'm laughing on the inside." ) So he's not laughing or smiling on the inside.
We did go to a few garage sale today. That was Jim's idea. He wanted to do anything but lay around. It's hard for him to get in and out of the car with the walker, so used his cane. It totally wore him out and he is sawing logs. I didn't get much. I couldn't resist a never used noodle maker for 3 bucks, so I could swell it in on Ebay for 50, but Shelley doesn't have one, so now she does. :) That was fun to bless her with after all her cooking for us. (and if we get homemade noodles from her some day, well, what do you know. :) )
Well, I'm going to go for now. Continue to pray for my dear husband. He needs a total healing of body, mind and spirit. Heck, so do I.
Us
PS. For a funny story, call Bruce. ;) Thanks Bruce.
Wednesday, April 22, 2009
Doctors
I don't get doctors. They want to know "Every single detail of anything" because it could be related to something serious with the SCT. So when Jim tells them, they analyze it, and they file it in the "no big deal" to "this could be big" bin, and then basically tell us this: "Forget about all that ails you, the pain, the neuropathy, the 25 pounds of water, the pain, the GVHD, the itch, the.....IF THE CANCER ISN'T BACK, it's good. Well, that's kind of hard. Jim feels like he's cancer free, so that he can be tired and lay around with back and neuropathy pain. There is sooooo much I can't and don't want to get into here, but as for prayer, pray for a COMPLETE HEALING for Jim.
At therapy on Monday, they fitted Jim's shoes. I asked them if there was anything we could do to teach him to respond to the right sensations. They therapist said that the nerve damage tells the brain that a feather is a knife, so a friend that I made in OT, Fran, suggested the following: Yesterday I went to the store and bout 7 bins, and into each one, I put the following. Pillow filling, smooth rocks, rice, pinto beans, cut up rough raffenae(sp), soft plastic shards, and flower petals. I also bought him some scrub pads for dishes. Jim needs to rub his feet and hands into these things to try and teach his brain what sharp is, what soft is, etc. Who knows if it will work, but the sheet from the bed feels like a bed of nails, etc., so nothing feels good or is easy for him....or me. :) Oh, look at the time...
Us
At therapy on Monday, they fitted Jim's shoes. I asked them if there was anything we could do to teach him to respond to the right sensations. They therapist said that the nerve damage tells the brain that a feather is a knife, so a friend that I made in OT, Fran, suggested the following: Yesterday I went to the store and bout 7 bins, and into each one, I put the following. Pillow filling, smooth rocks, rice, pinto beans, cut up rough raffenae(sp), soft plastic shards, and flower petals. I also bought him some scrub pads for dishes. Jim needs to rub his feet and hands into these things to try and teach his brain what sharp is, what soft is, etc. Who knows if it will work, but the sheet from the bed feels like a bed of nails, etc., so nothing feels good or is easy for him....or me. :) Oh, look at the time...
Us
Wednesday, April 15, 2009
TMI
Too Much Information....and no desire to share it.
Sorry, I haven't written. I hope I haven't caused any of you to worry.
I'm very tired of this whole thing, and that includes the blog. I am writing this mostly out of duty, with no desire. I don't have the desire for much these days. I'm not depressed. But I'm just not interested.
It's like Groundhog Day. That is what our lives have become. It's all the same day. And we're not at the point, where we are running to save the boy from the falling tree, or fixing someone's flat tire. We're probably more at the point of jumping off the building or driving the truck over the cliff. :)
Well, here's the bottom line with
Jim:
Sorry, I haven't written. I hope I haven't caused any of you to worry.
I'm very tired of this whole thing, and that includes the blog. I am writing this mostly out of duty, with no desire. I don't have the desire for much these days. I'm not depressed. But I'm just not interested.
It's like Groundhog Day. That is what our lives have become. It's all the same day. And we're not at the point, where we are running to save the boy from the falling tree, or fixing someone's flat tire. We're probably more at the point of jumping off the building or driving the truck over the cliff. :)
Well, here's the bottom line with
Jim:
- his broken rib is killing him
- he now has GVHD. He went for a biopsy last Monday, but it wasn't developed enough. They will probably biopsy him tomorrow. It's starting to get worse. It's on his torso and now a bit on his neck and face. Again, some GVHD is good cause it shows the new immune system is working, however, we don't want it to get bad, and so far with Jim, a lot of thing go wrong, so it's a bit of a concern.
- has osteopenia, frail bones, and he need meds, but not sure if it can be done right now because of the other problems.
- has a broken tooth that is causing him great pain, and is going to see a dentist tomorrow at the clinic. It needs to be pulled, but they can't do it because of platelets are so low.
- his blood is horrific. White blood cells and platelets are the pits. There is so much wrong, with his blood numbers, I don't know where to begin. Tomorrow there will be lots of questions.
- he has low grade fever, for almost a week now. Could be the GVHD or ????a few other things.
- he is cold all the time. Well, freezing all the time.
- has terrible swelling of his legs and feet with gaining water. They can't use Lasix because of his kidney numbers.
- has an infected toe. (We laugh because the doctors said, we want to know everything. Even if his toe is sore, we want to know it.) Well, guess what doc...Jim's toe is sore.
- his neuropathy is horrible for him. No improvement.
- degenerated vertebrae, which causes added discomfort.
- he needs special shoes to walk, but can't get fitted for them because of the swelling in his feet.
- Needs physical therapy, but can't get it because of the broken rib
- The traffic is horrible, and I'm sick of going to the hotel. I'm just too worn out for even that.
- We are usuallydrive 2 hours, are at the hospital for 6 hours with 2 hours of driving home. I probably push him around from test to clinic to pharmacy to PT to day hospital, to exray to blood lab to another test in the wheel chair to the tune of about 2 miles. Hospital days are usually from about 7 a.m. to 8 p.m. And it takes Jim 2 days to wake up from them almost. Touch stuff twice a week. Last week, we got to do that 3 times.
and on and on and on it goes. Where it stop, nobody knows.
The weather here is stinko. Rain and cold for weeks now. It's mirrored Pittsburgh's weather, except Pittsburgh actually had some nicer days, so that stinkeths.
Easter...well, it's great because of Jesus, but pretty much stunk otherwise. (sorry John and Leah. It had nothing to do with you.) I ruined cooking breakfast. I ruined Easter dinner. I even blew it when I went shopping for easter dinner. I couldn't even think of what to buy. And I didn't want to cook anyway. If it wasn't that I wouldn't be seeing John and Leah for a year or more, I would have told them not to come. I can't seem to handle too much of anything more except Jim's care.
So, how was your week? LOL
I have so much more to say, but I'm not going to. :)
We're enjoying Bob and Shelley's kids, and their home. We're so glad we're not at a hotel room. I'm wondering about long term though. The way things are going now, there is NO WAY we'll be out of here in 6 weeks.
Who knows
Thursday, April 9, 2009
NED
NED = NO EVIDENCE OF DISEASE.
I just sat down since leaving this morning at 9:00 a.m. We are emotionally and physically exhausted. But Thank you Lord, that the CT scan showed no evidence of Cancer. Sorry to have left you hanging all day, but this is the first time at the computer. Thank you sooooooooooo much for your prayers. I have much to report, but no energy, so I will write tomorrow.
But I did want to tell you that so you would know. Talk to you tomorrow.
Love US
I just sat down since leaving this morning at 9:00 a.m. We are emotionally and physically exhausted. But Thank you Lord, that the CT scan showed no evidence of Cancer. Sorry to have left you hanging all day, but this is the first time at the computer. Thank you sooooooooooo much for your prayers. I have much to report, but no energy, so I will write tomorrow.
But I did want to tell you that so you would know. Talk to you tomorrow.
Love US
Wednesday, April 8, 2009
Tomorrow
Amen, Junie. Sorry you weren't home when I called.
Well, we went up to the NIH today, and they did the normal blood tests and such. Thankfully they didn't keep Jim. He was crying thinking of going into the hospital again. They did the echo cardiogram, but it showed that no water was causing any problems for his heart or his lungs. They tested his blood again and did some other blood cultures because of the fever. His blood tests came back, and his HDL is even higher today than it was yesterday, so we have to go back tomorrow (moan). (Now I know why they wanted us to live 15 minutes away.) They want to give Jim a CT scan to see if the cancer is coming back. There are many things that can cause the HDL numbers to go up, but the principal investigator, the head honcho is concerned as well. Oddly, the numbers are higher than they have ever been. Also, Jim does not have any of the traditional cancer pain, so that is good. But if it's small still it wouldn't cause pain.
I knew going into this that our lives would never be the same. I've read a gazillion stories of people who had SCT, and their cancer is back before you know it. But I've also ready the other. The bottom line is I need to camp inside of Jesus the rest of my life, the rest of Jim's life to make it through every day, because with every temp, pain, funny blood test number, xray, etc., there could be those dreaded words. Jim's having a very difficult time in sooooooo many ways. Please pray for him. He just said that if the cancer is back, he's done. I respect that decision if that is a prayerful decision based on truth, but I think the enemy has him in knots, and we don't even know what is going on.
Anyway. Thanks.
Love us
Well, we went up to the NIH today, and they did the normal blood tests and such. Thankfully they didn't keep Jim. He was crying thinking of going into the hospital again. They did the echo cardiogram, but it showed that no water was causing any problems for his heart or his lungs. They tested his blood again and did some other blood cultures because of the fever. His blood tests came back, and his HDL is even higher today than it was yesterday, so we have to go back tomorrow (moan). (Now I know why they wanted us to live 15 minutes away.) They want to give Jim a CT scan to see if the cancer is coming back. There are many things that can cause the HDL numbers to go up, but the principal investigator, the head honcho is concerned as well. Oddly, the numbers are higher than they have ever been. Also, Jim does not have any of the traditional cancer pain, so that is good. But if it's small still it wouldn't cause pain.
I knew going into this that our lives would never be the same. I've read a gazillion stories of people who had SCT, and their cancer is back before you know it. But I've also ready the other. The bottom line is I need to camp inside of Jesus the rest of my life, the rest of Jim's life to make it through every day, because with every temp, pain, funny blood test number, xray, etc., there could be those dreaded words. Jim's having a very difficult time in sooooooo many ways. Please pray for him. He just said that if the cancer is back, he's done. I respect that decision if that is a prayerful decision based on truth, but I think the enemy has him in knots, and we don't even know what is going on.
Anyway. Thanks.
Love us
Tuesday, April 7, 2009
NIH
Well, Jim didn't have a fever during the day, but it's back again tonight. I've kind of been sick to my stomach all day. I can't seem to stop sighing, which is driving Jim nuts. But it's a stress reliever for me, I guess.
The NIH called today. Yesterday at the day hospital, they must have told Jim's team that he was still retaining water, so they want him to come in tomorrow, rather than Thursday, to have an echo cardiogram. They said that often times people with SCT have what is called capillary leak syndrome, and they want to make sure that Jim's heart and lungs are okay.
So, we are going tomorrow rather than Thursday, so. I hope we get to see his regular docs and all. This messes up our normal plans of the hotel room and all kinds of things.
Whatever...
The NIH called today. Yesterday at the day hospital, they must have told Jim's team that he was still retaining water, so they want him to come in tomorrow, rather than Thursday, to have an echo cardiogram. They said that often times people with SCT have what is called capillary leak syndrome, and they want to make sure that Jim's heart and lungs are okay.
So, we are going tomorrow rather than Thursday, so. I hope we get to see his regular docs and all. This messes up our normal plans of the hotel room and all kinds of things.
Whatever...
Bad, sad, mad and no glad
Well, it's 1.am. and I can't sleep. It's been a weird 24 hours, leading to just now, with me crying cause I read that Amy and Brian and family are moving away. Jim and I both desired to come home and finally play that game of catan, have that dinner, that cell group, and spend time with some of the best folks we have met in a long time.
Leading up to this was our hotel stay at the Hilton last night. We couldn't get in right away because of a fire alarm call, and when we got in, the room we got was so perfumed that it started Jim coughing and got my throat going. We finally got into a room and to bed and up to the NIH for another long day. We come home and here's what we sit with.
Jim needs special orthopedic shoes, and we'll fight about it because he won't want to get them and I think he should. Why doesn't the NIH pay for them?
His ankle is black and blue and a bit swollen, but he doesn't know how he twisted it because he can't feel his feet. That's one of the reasons for the special shoes. His other foot is hurting.
Jim broke a rib. So that pain he's been in is a broken rib...from bending down. Nothing they can do about that.
His kidney numbers are a bit better, but his protein numbers are still down, and he's still retaining water in his legs. Tonight his feet looked scary to me. They don't know why he's retaining water.
His LDH number is REALLY high. That's one of the numbers that can indicate cancer is present. I wasn't worrying too much about any of this, but then.
Tonight Jim has a temp of 99.2.
Now all of this might mean nothing, but I don't know.
Leading up to this was our hotel stay at the Hilton last night. We couldn't get in right away because of a fire alarm call, and when we got in, the room we got was so perfumed that it started Jim coughing and got my throat going. We finally got into a room and to bed and up to the NIH for another long day. We come home and here's what we sit with.
Jim needs special orthopedic shoes, and we'll fight about it because he won't want to get them and I think he should. Why doesn't the NIH pay for them?
His ankle is black and blue and a bit swollen, but he doesn't know how he twisted it because he can't feel his feet. That's one of the reasons for the special shoes. His other foot is hurting.
Jim broke a rib. So that pain he's been in is a broken rib...from bending down. Nothing they can do about that.
His kidney numbers are a bit better, but his protein numbers are still down, and he's still retaining water in his legs. Tonight his feet looked scary to me. They don't know why he's retaining water.
His LDH number is REALLY high. That's one of the numbers that can indicate cancer is present. I wasn't worrying too much about any of this, but then.
Tonight Jim has a temp of 99.2.
Now all of this might mean nothing, but I don't know.
Friday, April 3, 2009
PICS
Here are a few pics of my beloved.
This one is a funny one. It reminds me of my dog Ruby. Jim's being Ruby here. Ruby would act like if she shut her eyes, then I and my rules would just disappear. I'm telling Jim. "Hon, enough computer fixing, you need some rest. This is the first day out of the hospital. He just shut his eyes and pretended like I wasn't there. He's still at it, too.
This one is a sad one for several reasons. It reminds me of Unc. I love Unc the short few years I got to know him. This piano used to be his, and he left it to us, but it didn't fit in our house. So, now it's here. It's nice to see it again. It's nice that the kids are playing on it daily, so it's still in the family. The saddest thing is that Jim used to play beautifully, but he just can't get his fingers to obey and move because of the neuropathy. I so miss hearing him play and sing.
Life sure has a way of changing on us....
Thursday, April 2, 2009
April Fools
Hello Everyone:
I bet you are all glad I didn't play an April Fool's joke on you. Something like, Jim's cancer is back....April's Fools. I wouldn't dare. Johnny would kill me. He's not forgiven me for the April's Fools jokes I played on him as a kid...or the Werewolf pains....LOL. Inside joke. Sorry.
Well, Yes, Maddy, and Kimber, I did mean you. And Amy and Kristen and Nancy and...All you wonderful women of my church. I love you all. You are sooooooo special and I miss you so much.
We have problems here. Big problems. HUGE. We're homeless. Sort of, kind of. We can't go home because of the mold problems in our house. Jim could die. That's it in a nut shell. But you know what. I'm too exhausted to go into it. I'll worry tomorrowThe doctor was adamant. I knew this, but didn't tell Jim, but it came out... I have been hinting and trying to break it to Jimj gently. For now, I have my basement apartment. Maybe Bob and Shelley want permanent boarders. They do have an inground pool here, and we watch movies with surround sound and the picture is like being at the small movie theatre, about 12 feet by 6 feet. or something like that. And Shelley cooks. :) The kids are fun. Hmmmm. But we would miss all of you in Pittsburgh.
Jim's appt was today. We are totally exhausted. We went to the Hilton last night and got up early and didn't get home until about 4 today. Jim had physicial therapy, which is good, because Jim hurt himself bending over. He's so deconditioned after being in bed for so long, that one twist, and he's pulling muscles and such. He's got a long row to hoe yet. Speaking of hoeing. That "don't touch dirt" thing, kind of can be forever. And he can't walk through the leaves and stir up leave debris and such. No leaf mold. He can't lay mulch. I guess this goes in line with the no mold in the home thing. Anyway.
Well, I will post maybe tomorrow or so and post a pic of Jim. His hair is looking good.
We miss spring in Pittsburgh and being home for Easter and stuff. Wow, that makes Thanksgiving, Christmas and now Easter that we aren't home. So weird.
US
I bet you are all glad I didn't play an April Fool's joke on you. Something like, Jim's cancer is back....April's Fools. I wouldn't dare. Johnny would kill me. He's not forgiven me for the April's Fools jokes I played on him as a kid...or the Werewolf pains....LOL. Inside joke. Sorry.
Well, Yes, Maddy, and Kimber, I did mean you. And Amy and Kristen and Nancy and...All you wonderful women of my church. I love you all. You are sooooooo special and I miss you so much.
We have problems here. Big problems. HUGE. We're homeless. Sort of, kind of. We can't go home because of the mold problems in our house. Jim could die. That's it in a nut shell. But you know what. I'm too exhausted to go into it. I'll worry tomorrowThe doctor was adamant. I knew this, but didn't tell Jim, but it came out... I have been hinting and trying to break it to Jimj gently. For now, I have my basement apartment. Maybe Bob and Shelley want permanent boarders. They do have an inground pool here, and we watch movies with surround sound and the picture is like being at the small movie theatre, about 12 feet by 6 feet. or something like that. And Shelley cooks. :) The kids are fun. Hmmmm. But we would miss all of you in Pittsburgh.
Jim's appt was today. We are totally exhausted. We went to the Hilton last night and got up early and didn't get home until about 4 today. Jim had physicial therapy, which is good, because Jim hurt himself bending over. He's so deconditioned after being in bed for so long, that one twist, and he's pulling muscles and such. He's got a long row to hoe yet. Speaking of hoeing. That "don't touch dirt" thing, kind of can be forever. And he can't walk through the leaves and stir up leave debris and such. No leaf mold. He can't lay mulch. I guess this goes in line with the no mold in the home thing. Anyway.
Well, I will post maybe tomorrow or so and post a pic of Jim. His hair is looking good.
We miss spring in Pittsburgh and being home for Easter and stuff. Wow, that makes Thanksgiving, Christmas and now Easter that we aren't home. So weird.
US
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