Hi Everyone:
Well, that went easier. I'm referring to the staying at the hotel. It was so less traumatic on Jim, hence on me, so for now we will continue to do the commute the night before and stay at the hotel.
On the 14th day post transplant, he was 85 percent engrafted. At day 28, he was 89 percent engrafted. There is another thing in the blood that they monitor, and that is 42 percent engrafted, so that's heading in the right direction, too, but the main number is 89. So that is 4 percent up from the last time, which is good.
Jim's appt was long. He was unable to get much needed physical therapy because of snafu's. He needed to get hydrated because his creatinine was high. He needs to drink more water. The drugs he takes are hard on his body. They are also giving him a drug called procrit, which helps stimulate red blood cell production. I just came back from reading about it on the website, and I have to ask WHY IS JIM ON THIS....THE RISKS SEEM INSANE... Anyway, he's on that now. His blood is still slow and Jim is so very weak.
Despite the better state of health that Jim is in (compared to having cancer) it's still so touch and go. And it seems a miracle to us that he could ever possibly even get a bit of strength back. I think he has zero muscles.
Me? Well, every night my legs are swollen. I have no idea what that is about. I would say, "well, I have to get off of them, since I'm on them all the time, but that is nothing new, so I have no idea what that is all about. I'm feeling so old. I wonder if either of us will ever be the same, or even resemble our old selves, if not in looks, at least in spirit. It doesn't seem so.
Also, I tend to want to say, "If Jim's cancer doesn't come back" after everything I write or say about him, like somehow a reminder to you, to me, to???
I wonder. Will I still have friends when I get home? Will my honeybee remember me? Will I open the swimming pool? Will I still have the beginnings of new friendships I was making? How about Jim? Will he ever be able to cook breakfast for his men's breakfasts? Will we ever get to church? Will we will have a church? Will our 3rd pew still be "ours?" Will my garden be overtaken with weeds? Will my house survive the spring rains without me there to clear the driveway drain? Will I have any tomatoes or beans in my garden this year? Probably not. Sad to me.. Plus 20 million other questions.
Well, I better get this day started and live in the present.
Peace
Us
Tuesday, March 31, 2009
Saturday, March 28, 2009
the last few days
Hi Everyone:
First I want to thank you for all your kind and encouraging messages. I see Jim every once in a while checking to see if anybody wrote anything or wrote him. It's always good to see and hear how many love us. So, thanks, guys. Junie, you're so sweet. You always say the best thing. Jim told me that Unc would call someone that he really liked, honey girl. :) I HAVE to call you. I have been want to so badly. I'll get there. There are many of you that I've wanted to call and tell you how much your note meant to me. Kelly, thanks so much for the offer of purchasing us a walker. I just ordered one on costco and they will deliver it. I just didn't even have time to e-mail you back. And many others. I hate feeling like I'm leaving someone out or that I love someone more, or that someone is better than someone else, because that is not the case. You have all, every single one of you, touched us in one way or another and continue to do so. So, thanks.
So, what has the past week been like? CRAZY. Let's see. Jim got out on Tuesday, and we had to go back to the hopt Wed and Thurs. That was just completely nuts. Jim was sooooooooo worn out, and we had to get up so early. Both days, Jim almost had bathroom accidents, and his back is KILLING him from the ride. Both days traffic was horrendous, and poor Jim almost could just not handle it. On Thursday, we got up at 5:30 and left at 6:20, and it took us 3 hours to get there. 3 HOURS... It would normally take an hour, an hour and 15 mins. And then spending hours sitting at the hopt. waiting for tests and such, it's just too much.
The good thing is that being here, I am being cared for. I am eating good healthy meals. Shelley and I are taking walks in the morning, and it's a wonderful time of exercise and sharing. Talking and walking. Equal parts of both. I feel guilty not even doing a dish. And yet at the same time, everytime I don't have to do a dish, a little scale of stress falls off, as I know that everything that I have gone through over the past 2 years is way beyond myself and I couldn't have done it without the Holy Spirit sealed within me. And I'm glad I'm sealed with the Holy Spirit....so none can leak out. Cause I need all I can get. And every chance I get to sit, rest or to just be is helping me reserve my???? for who knows what.
The bad part of being here is the traffic and the travel and how hard it is on Jim. So, we have decided, despite the cost, we are going to have to drive up to Bethesda on Sunday Nights and Wednesday nights and stay at a hotel there so that we can go to the NIH the following morning and get there on time (as we have been very late for both appointments). Jim will need to go twice a week the whole time we are here.
So, while we'll still be doing a little bit of that in and out of hotel room stuff, but I am planning it in such a way that we arrive there at night, in time for bed, and just leave in the morn. We'll just use their soaps and stuff, so I won't have to pack up all kinds of stuff. (Sorry, Judy, no more little bottles of bath stuff for your missionary dwelling anymore, but I'm sure you understand. Plus you probably have enough for a while. ) So, it will be a pain in the butt still, but much better for Jim.
Jim...well, I already see his spirits getting down. I think he thought that getting out of the hospital would mean he was feeling stronger and ready to go. And I can understand this, because it's the desire of our hearts so badly. But this can just take years, even. For instance. Jim is not allowed to touch dirt until his immune system is totally back. That could be 2 years. Same with swimming pools, being in crowds, etc. His energy level could take just as long.
I think it's important that Jim stay in the word, in the presence of God. So, please please PLEASE continue to pray for him. The enemy is still at work, even if the cancer isn't. And I need prayer still, too. My house in Pittsburgh is falling apart, and I am here. And even if I were there, Jim is too sick to do anything. All these things can swirl over and over in my mind and cause anxiety in my heart if I'm not on the alert for the adversary trying to steal my peace.
I ran into the Zetta, some of you know who I mean, but she works for the Stemcell team. She said to me. "We are VERY encouraged about Jim. Very encouraged that his cancer isn't back yet and that he is doing well." So, that was very good to hear. I had to give Jim a shot for neutropenia, however, that was the longest time of not being neutropenic that he has had in a long time. Kidney numbers....gettting better. Red blood cell numbers....getting better. Less transfusions, things like that.
Anyway you all have a great weekend, and I'll be back with hopefully good news soon.
We love you
Us
First I want to thank you for all your kind and encouraging messages. I see Jim every once in a while checking to see if anybody wrote anything or wrote him. It's always good to see and hear how many love us. So, thanks, guys. Junie, you're so sweet. You always say the best thing. Jim told me that Unc would call someone that he really liked, honey girl. :) I HAVE to call you. I have been want to so badly. I'll get there. There are many of you that I've wanted to call and tell you how much your note meant to me. Kelly, thanks so much for the offer of purchasing us a walker. I just ordered one on costco and they will deliver it. I just didn't even have time to e-mail you back. And many others. I hate feeling like I'm leaving someone out or that I love someone more, or that someone is better than someone else, because that is not the case. You have all, every single one of you, touched us in one way or another and continue to do so. So, thanks.
So, what has the past week been like? CRAZY. Let's see. Jim got out on Tuesday, and we had to go back to the hopt Wed and Thurs. That was just completely nuts. Jim was sooooooooo worn out, and we had to get up so early. Both days, Jim almost had bathroom accidents, and his back is KILLING him from the ride. Both days traffic was horrendous, and poor Jim almost could just not handle it. On Thursday, we got up at 5:30 and left at 6:20, and it took us 3 hours to get there. 3 HOURS... It would normally take an hour, an hour and 15 mins. And then spending hours sitting at the hopt. waiting for tests and such, it's just too much.
The good thing is that being here, I am being cared for. I am eating good healthy meals. Shelley and I are taking walks in the morning, and it's a wonderful time of exercise and sharing. Talking and walking. Equal parts of both. I feel guilty not even doing a dish. And yet at the same time, everytime I don't have to do a dish, a little scale of stress falls off, as I know that everything that I have gone through over the past 2 years is way beyond myself and I couldn't have done it without the Holy Spirit sealed within me. And I'm glad I'm sealed with the Holy Spirit....so none can leak out. Cause I need all I can get. And every chance I get to sit, rest or to just be is helping me reserve my???? for who knows what.
The bad part of being here is the traffic and the travel and how hard it is on Jim. So, we have decided, despite the cost, we are going to have to drive up to Bethesda on Sunday Nights and Wednesday nights and stay at a hotel there so that we can go to the NIH the following morning and get there on time (as we have been very late for both appointments). Jim will need to go twice a week the whole time we are here.
So, while we'll still be doing a little bit of that in and out of hotel room stuff, but I am planning it in such a way that we arrive there at night, in time for bed, and just leave in the morn. We'll just use their soaps and stuff, so I won't have to pack up all kinds of stuff. (Sorry, Judy, no more little bottles of bath stuff for your missionary dwelling anymore, but I'm sure you understand. Plus you probably have enough for a while. ) So, it will be a pain in the butt still, but much better for Jim.
Jim...well, I already see his spirits getting down. I think he thought that getting out of the hospital would mean he was feeling stronger and ready to go. And I can understand this, because it's the desire of our hearts so badly. But this can just take years, even. For instance. Jim is not allowed to touch dirt until his immune system is totally back. That could be 2 years. Same with swimming pools, being in crowds, etc. His energy level could take just as long.
I think it's important that Jim stay in the word, in the presence of God. So, please please PLEASE continue to pray for him. The enemy is still at work, even if the cancer isn't. And I need prayer still, too. My house in Pittsburgh is falling apart, and I am here. And even if I were there, Jim is too sick to do anything. All these things can swirl over and over in my mind and cause anxiety in my heart if I'm not on the alert for the adversary trying to steal my peace.
I ran into the Zetta, some of you know who I mean, but she works for the Stemcell team. She said to me. "We are VERY encouraged about Jim. Very encouraged that his cancer isn't back yet and that he is doing well." So, that was very good to hear. I had to give Jim a shot for neutropenia, however, that was the longest time of not being neutropenic that he has had in a long time. Kidney numbers....gettting better. Red blood cell numbers....getting better. Less transfusions, things like that.
Anyway you all have a great weekend, and I'll be back with hopefully good news soon.
We love you
Us
Tuesday, March 24, 2009
Long day
Poor Jim....He's tired.
Wow, no wonder. Look at that. And Jim # 2 isn't another Jim. That's our Jim needing another line. He's filling up the whole board. Next year, it'll be 26.5 in Chicago next year with Leah.
Ahhh, there he is. All awake. Wow, look at that hair growth. Time to rub it and talk funny. I guess only Jim, Sister, and Johnny knows what that means. He's looking handsome, huh?
Oh Nooooooo, HELP....IS HE TRYING TO ESCAPE. Trying to be incognito, wearing a hospital mask of all things ? Could it be so???
Yep, it's him. Oh, look at him trying to wave innocently, like he's not escaping.
And could these be his accomplices? Are they the 3 Amigos? No, it's the 3 Baldauff Banditos.
Yes, it's true. Jim got out of the hospital today. What a glorious day. It was just to busy. I made 4 trips to the van, and my back is killing me, and Jim wants to rub my head while I fall asleep, and we have to be back at the hospital tomorrow at 9:00 am, so it's up at 6, so I'll fill you all in as soon as I can, but I thought you would enjoy some pics and some news that
JIM IS HOME.
Saturday, March 21, 2009
You know Jim has a new lease on life when:
- He e-mails me pictures of scooters that he wants to get. (fear not, we're not getting them. It's just that they have wheels and things with wheels appeal to me, and Jim, too, and we've always talked about them.)
- He e-mails the whole website of scooters.
- I tell him to go ahead and buy one already. (he still won't)
- He's ready to come home.
- You hear that bounce in his voice.
- He's interested in what Shelley's cooking.
- He went to the vending machines for the first time ever in a hospital.
- He's ready to go fishing.
- He wants to go to the cottage.
- He wants to go to our church.
And the number one reason you know that Jim has a new lease on life.....
He asks:
- WHEN ARE WE GOING TO DISNEY. (he says he'll use one of those motorized carts.) What a nut.
Well, this is cool for us. The docs say that if Jim continues to do this well, we can go home 100 days after the transplant. So, let's see. The transplant was. February 19. So, that's what...May 30th? Wow, imagine that. Coming home May 30th, cancer free. I think the thing that would really wow me is being cancer free 6 months from now. You know what though. I'm just taking it as it comes.
Right now, I am sooooooooooooooo happy to be out of that Lodge. I would rather die myself then to have to go back to that hospital setting. I am toooooooooo lonely there. I'm done with that. Even though I have been very very sick (I'm on the mend...and within 7 days only...how about that) it has been sooooo good for me to be here. I think I was losing my mind up there caged in. Poor Jim. Now that he's feeling better, it's hitting him, too. He just called me. He's ready to come home.
Responses: I can't recall everything everyone mentioned, but I really enjoy reading your posts and hearing from you all. It makes me feel the love. Just like Jim feels the love when my sister calls him (hint hint). Nancy, I would LOVE some herbs, as I will come home to NO GARDEN. BOO HOO HOO HOO HOO. I can't imagine. Anyway I would love some. Amy, well, put. I like the way you worded that. It is sweet news, and the sweetest news is Jesus. And your son is too smart for me. Way to go Evan. Next it will be The Count of Monte Cristo, the unabridged version. ;) Tell him I said, "Good Job, young man." And I have no idea what those words mean.
Well the only other prayer request right now, in regards to Jim is to continue to pray that, of course, the cancer stays gone and he doesn't get GVHD, but that also his neuropathy would reverse itself, and his nausea as well.
The docs have no idea what is making him so nauseous. Hence, the study on Tuesday.
He still has the bone marrow biopsy on Monday. He's also going to physical Therapy. We have to buy him one of those fancy walkers with the brakes on it, and the seat. It's the only way he will be able to get around. They are teaching him how to walk. How take his foot put it down and push off from the ball of his foot and toes in a smooth motion. It's hard for him because he can't feel the bottom half of his legs. He sort of walks like Herman Munster. (sorry hon...at least you don't have the bolts in your neck.) Anyways.
Once Jim is out, we will have to go back to the center 2 times a week. We will be there all day. He will have to be seen by the docs, have blood tests, have to get IV magnesium. He'll have to go to physical therapy and on and on. More scans and such. So pray that God keeps us safe on those crazy highways, too.
Which reminds me. I got a ticket. And I didn't even know it. They send a letter to my house in PGH (thanks for doing my mail sister) (where would I be without my sister???? Jail) Anyway, and it shows a picture of my van and the license plate. I was going 40 in a 25 mph zone. I don't even know where I was. Big brother is watching in DC. Yikes. It's 40 dollars. Which is a lot better than in PA. I hope my sister read that close. Well, it's late and I'm rambling.
Nite folks.
Friday, March 20, 2009
Earl, GVHD, Cancer, etc.
Hi folks:
Okay, first things first.Jim:
Okay, first things first.Jim:
- does NOT have GVHD of the gut. This is very good news.
- has NO EVIDENCE OF DISEASE...yippie.
This means that Jim has been cancer free for 6 weeks or more. He called me early this morn. Woke me up, in fact. His doc said last night when he saw him in the hall. I'll be in your room to speak with you. And then he never came in. No wonder Jim was worried last night. And then Jim actually had to ask the doctor this morn. "So what did the PET scan say." Almost like the doctor expected us to expect that the cancer was still gone. Imagine that. No evidence of disease. That is sooooooooo sweet to hear.
Anyway. It's very hard to feel anything more than a bit excited. Not that I have a defeated mentality or anything, but as I've said.."My HOPE is built on nothing less, than Jesus' blood and righteousness....on solid rock I stand, all other ground is sinking sand. So, to hope in anything other than Jesus sort of spells disaster when I look back. He comes through, but not in the ways I've always anticipated. And yet, it's great to celebrate great things. So, I guess there is a bit of me not wanting to rock the boat....
One of Jim's fave nurses said. "Get strong and get to that cottage." Cottage heck. I'll be excited to get home. It's just real hard to get "excited" but it sure is nice. That's it. I'll call it nice.
And here's a pic of that fave nurse. She is wonderful, beautiful, a fellow sister in the Lord, and just one of the kindest, knowledgeable, friendliest nurses I've ever had the honor to know. If we lived close, we'd be friends, and I'ld babysit the children she doesn't have yet. She's taken very VERY good care of your brother, father, friend. Pray that she meets Mr. Right. I know she would like to meet him. I'm going to miss her.
Isn't she pretty.
Well, I guess it would be fun to go to the cottage too. I remember last fall when we closed it up, how terribly sad it was. How I cried and cried and cried. I remember our "last" golf cart ride. Well, as I said, it's hard to think forward that we'll have more years to do that. But it is kind of heart warming to hope that we'll get one more ride in, this side of heaven. And we're getting closer and closer to that chance. Thank you Lord.
Us
PS. Jim's hair is growing back. It's at that great stage where I can rub it and talk funny. Only the priviledged (choke, laugh gag) know what that sounds like....Huh, Rubs?
:)
PSS Fess up. Who is the "anonymous" that likes Earl and the Crabman?
Thursday, March 19, 2009
responses and stuff
Well, no news on anything yet. No news on the GVHD babopsy. No news on the PETscan today, although Jim could probably have gotten that, but he's afraid. Can't say I don't blame him. But he did walk up to the library today with his walker all by himself. And he walked down to the 1st floor to get some zuppa.
They won't let him come home tomorrow cause I'm still sick. I called the doc and he put me on some antibiotic, so I should be good by Monday, and we should know much more then.
Amy: I used to LOVE Afrin. I couldn't live without it when I was sick, but then one time I got a severe sinus infection, and my doc said that's the worse stuff to use, so I've been afraid of it since, but I always dream of it when I can't breathe at 3:00 and my mind is racing. :) Maybe I should give it another try.
Rachel and Amy: We could have had tea, had we all been neighbors and friends like in the olden days, before phones and computers. We could have spotted each other's light on in each other's kitchen and mosyed on over. Sounds dreamy.
Sister: I'm not touching that "humming" thing. And obviously Kristen hasn't read the blog yet, or we would have had some smart aleck comment about her using the netty pot on you tube.
Mary Jo: You crack me up, "Sistah." I told you I have some of those OCD tendencies. We are VERY much alike. I agree. It's been so fun getting to truly know you, as I never have all these years. We are definately kindred spirits. Too bad we don't live closer. But then again, because of the similaries, we might drive each other bonkers with too much of a good thing.
As for remembering all those things. Jim has always said, my mind is a steal trap. And I think, yeah, and my sanity is caught up in that trap, trying to get free.
Tomorrow is the big drum roll day......Is Jim totally grafted.... Is Jim still cancer free.... Does Jim have GVHD of the gut.....
I'm thanking God for whatever he gives. I really am. The roller coaster life has lost it's ability to thrill me or scare me.
Shelley's taking good care of me. I asked her if I could keep her. She said, "yes." But I don't think she really meant it. ;)
They won't let him come home tomorrow cause I'm still sick. I called the doc and he put me on some antibiotic, so I should be good by Monday, and we should know much more then.
Amy: I used to LOVE Afrin. I couldn't live without it when I was sick, but then one time I got a severe sinus infection, and my doc said that's the worse stuff to use, so I've been afraid of it since, but I always dream of it when I can't breathe at 3:00 and my mind is racing. :) Maybe I should give it another try.
Rachel and Amy: We could have had tea, had we all been neighbors and friends like in the olden days, before phones and computers. We could have spotted each other's light on in each other's kitchen and mosyed on over. Sounds dreamy.
Sister: I'm not touching that "humming" thing. And obviously Kristen hasn't read the blog yet, or we would have had some smart aleck comment about her using the netty pot on you tube.
Mary Jo: You crack me up, "Sistah." I told you I have some of those OCD tendencies. We are VERY much alike. I agree. It's been so fun getting to truly know you, as I never have all these years. We are definately kindred spirits. Too bad we don't live closer. But then again, because of the similaries, we might drive each other bonkers with too much of a good thing.
As for remembering all those things. Jim has always said, my mind is a steal trap. And I think, yeah, and my sanity is caught up in that trap, trying to get free.
Tomorrow is the big drum roll day......Is Jim totally grafted.... Is Jim still cancer free.... Does Jim have GVHD of the gut.....
I'm thanking God for whatever he gives. I really am. The roller coaster life has lost it's ability to thrill me or scare me.
Shelley's taking good care of me. I asked her if I could keep her. She said, "yes." But I don't think she really meant it. ;)
3:30 a.m
So, what do you do at 3:00 a.m when you're sick? I don't know. But here's what I did/do.
- stare into the dark - that 's boring
- pray - that's boring. Feels like God isn't there. Besides what could I possible say that he hasn't heard. And I'm not feeling like praising Him cause I feel so crappy.
- feel bad about not praising the Almighty God who is so worthy of my praise - but despite that, I still don't do it cause I'm probably passively aggressively mad at Him, which is sooooooo stupid.
- turn on the computer - many possibilities there
- play spider solitary - that's boring
- turn on the ipod player I bring from PGH - amazed that I can
- wonder where those songs on the IPOD came from -They might possibly be David and Andrea's wedding CD songs (I loved that CD)
- Sit amazed that this little IPOD instrument stumps me still - seeing how "old" I am because I"m stumped by an Ipod
- Thinking about how I got my Ipod free - chuckle and remember a good memory of when Jim wasn't sick.
- read about tracing blocked IP addresses - that's boring
- read the drudge report - drudgery
- wonder how long it will take before people with "I voted for Obama" bumperstickers to take them off, out of embarassment. - realizing, they probably won't ever see why they would need to rip them off.
- switch directions in my head - back to me
- feel sorry for myself - that makes me feel worse
- think of how blessed I am - feels like a lie, despite the truth of it
- wonder how Jim is - makes me sad
- wonder why I didn't think of him first - because my default setting is meeeeeeeeeeee.
- seeing my selfishness that I can't get away from - boring, cause we're all selfish
- judging those who read this and think "I'm not selfish" - that's boring and self righteous
- reading other blogs - that's boring
- go to BR to use the netti pot - nose is too clogged. Salt water ends up in my throat. End up thinking of Kristen, laugh at that, go back to computer
- laugh that poor Kristen is thought of when I use my netti pot -poor girl will always be when I do. I told her she would be.
- wondering if I spell "netti" properly - so I google it
- laugh at the You Tube video of some guy using the netty pot - 3 ha ha's cause it's more gross than funny
- Sneeze, cough, gag - used the last tissue
- Listening to Shelley use the treadmill - I'm jealous that I can't, she's fit, and has a life
- Realizing I've been jealous of everyone I see who has a life - which is everyone I see unless they are on a carton of milk or Compassion Internation ad - which makes me feel guilty.
- Thinking of my sister - cause I'm really not jealous of her life, cause she has it tough with that stupid lympedema, and she struggles to make ends meet since Mark's injury 15 years ago
- Thinking of my sister being 52 and how hard she has had it - makes me feel guilty
- Think of me and Elaine's fave saying - "guilt, the gift that keeps on giving."
- Think of why Elaine hasn't called me in 2 months - makes me sad
- Think of despite Elaine not calling, she's one of my best buds and one of the few that can get away with that. (if you're reading Elaine, I love and miss you)
- Listen to Allison Kraus on the Ipod - fantasize about how wonderful it would be to sing like that - fantasize about how wonderful it would be to breathe through my nose so I could sing, period...
- Listen to the treadmill go off - wondering about what wonderful breakfast Shelley is going to cook - wondering if I'll be able to taste it.
- Google for the 20th time, GVHD of the gut - decide not to
- Think about shopping online - online retail therapy isn't very fun when broke
- Decide to blog. - BUT ABOUT WHAT?
And that's how you got this....the opportunity to live inside my tormented brain early in the morn. Welcome. I hope you've enjoyed your journey.
Wednesday, March 18, 2009
GVHD?
Hi all:
Too sick to report in depth. Jim had endoscopy. They saw 3 areas where they biopsied that look like GVHD. They took biopsies. If it is, pray it doesn't turn to bad GVHD. GVHD of gut is the worse.
Too sick to report in depth. Jim had endoscopy. They saw 3 areas where they biopsied that look like GVHD. They took biopsies. If it is, pray it doesn't turn to bad GVHD. GVHD of gut is the worse.
Tuesday, March 17, 2009
Will it EVER end?
Hello:
Well, I"m sick as a dog. I got my meds and my bed, and my Neti pot. (I'm thinking of you Kristen. And congrats on the boy. As my sis said, great name. I won't forget that it. :) I trust everything is in order.)
You know, if I don't write, that doesn't mean that the drama has ended. You're just missing on some. But don't worry, there's more to go around...This whole nightmare gives new meaning to drama queen. I only wish I was making some of this stuff up.
Anyway, early in the morn, the doc said they wanted me to come in Thursday so I can learn how to take care of Jim. (LOL...laugh,,,cough, sputter, choke) He told them no, that I was too sick. So, they aren't going to let him out until I"m better, possibly. Which makes us wonder how anyone with a SCT can live with anyone else...But anyway, Jim continues to be nauseated, so they want to do an upper GI tomorrow to make sure that it isn't GVHD of the stomach. After talking to Jim, the GI doc doesn't think it's GVHD, which is good, cause that's one of the worse places to get it, but just to be safe, they want to do this procedure. So, Jim is NPO again tonight. But of course, they don't know what time they will do "the procedure" tomorrow. I hope it's not a retake of the last procedure. HOWEVER... on Thursday, as part of the seriesof many tests, they are going to do another bone marrow biopsy. For those of you who don't know what it's like, it's like this....Taking a hand drill and twisting it and twisting it through the skin and everything else, on your hip, and into the bone and through the bone and into the marrow. Nice, huh? Jim tells them that they aren't doing it unless they put him to sleep. This will be his 4th one, and he's done with them. They are so very painful. So, they say they will check with the doc. Jim says, "I"ll be put under tomorrow during the upper GI, do it then." So, they are going to see if they can. Well, this ought to be good.
Anyway, all sarcasm aside, pray that they do both at the same time, that both tests are negative, that Jim's bone marrow is negative for cancer, but positive for Bob's cells. And pray that I get better soon, so that Jim can come home, and pray that I don't get sick again, because this is very nuts. If I wasn't so exhausted, I would laugh.
There's no tv here, which isn't a major thing, except for when I'm sick and I can't do anything, so I just sit in my room watching clips of "the office" trying to figure out what my son likes it. I'm starting to "get it", which is scary. Jim and I rented Dan in real life, and really liked Steve Carol in that, so I thought maybe that would be good to see online. I don't know what I would have done if Johnny hadn't given me this computer. However, I can't believe I'm missing March madness, especially with Pitt being 1st in the east for the first time every. But heck I have my own brand of madness.
US
Well, I"m sick as a dog. I got my meds and my bed, and my Neti pot. (I'm thinking of you Kristen. And congrats on the boy. As my sis said, great name. I won't forget that it. :) I trust everything is in order.)
You know, if I don't write, that doesn't mean that the drama has ended. You're just missing on some. But don't worry, there's more to go around...This whole nightmare gives new meaning to drama queen. I only wish I was making some of this stuff up.
Anyway, early in the morn, the doc said they wanted me to come in Thursday so I can learn how to take care of Jim. (LOL...laugh,,,cough, sputter, choke) He told them no, that I was too sick. So, they aren't going to let him out until I"m better, possibly. Which makes us wonder how anyone with a SCT can live with anyone else...But anyway, Jim continues to be nauseated, so they want to do an upper GI tomorrow to make sure that it isn't GVHD of the stomach. After talking to Jim, the GI doc doesn't think it's GVHD, which is good, cause that's one of the worse places to get it, but just to be safe, they want to do this procedure. So, Jim is NPO again tonight. But of course, they don't know what time they will do "the procedure" tomorrow. I hope it's not a retake of the last procedure. HOWEVER... on Thursday, as part of the seriesof many tests, they are going to do another bone marrow biopsy. For those of you who don't know what it's like, it's like this....Taking a hand drill and twisting it and twisting it through the skin and everything else, on your hip, and into the bone and through the bone and into the marrow. Nice, huh? Jim tells them that they aren't doing it unless they put him to sleep. This will be his 4th one, and he's done with them. They are so very painful. So, they say they will check with the doc. Jim says, "I"ll be put under tomorrow during the upper GI, do it then." So, they are going to see if they can. Well, this ought to be good.
Anyway, all sarcasm aside, pray that they do both at the same time, that both tests are negative, that Jim's bone marrow is negative for cancer, but positive for Bob's cells. And pray that I get better soon, so that Jim can come home, and pray that I don't get sick again, because this is very nuts. If I wasn't so exhausted, I would laugh.
There's no tv here, which isn't a major thing, except for when I'm sick and I can't do anything, so I just sit in my room watching clips of "the office" trying to figure out what my son likes it. I'm starting to "get it", which is scary. Jim and I rented Dan in real life, and really liked Steve Carol in that, so I thought maybe that would be good to see online. I don't know what I would have done if Johnny hadn't given me this computer. However, I can't believe I'm missing March madness, especially with Pitt being 1st in the east for the first time every. But heck I have my own brand of madness.
US
Monday, March 16, 2009
feeling bad
Hello:
I was actually enjoying not writing on the blog. But when I see "Canton Ohio" and many others checking and checking the blog, I felt badly cause I know you love us and want to know what is going on. I got your calls, MJ & June. I was answering my phone, it's just that there is no reception at the hospital, so I missed your calls. It was great to hear your voice and your declaration of love for me, as well. It made me cry.
Jim is doing well. He continues to have unexplained nausea. The docs were concerned and last Thursday did a CT scan. It showed no visual cancer growth. It actually showed the scar tissue area of the previous cancer had also shrunk. We don't know exactly when Jim was "cancer free" because "size" hadn't changed from after the second course of chemo. the PET scan is the very accurate way of measuring cancer. When it showed the cancer was in remission, it could have been since after the second chemo. Who knows. But at the very least, this CT scan shows that Jim has been in remission now for 6 weeks, which is pretty amazing.
They also did surgery on his backend. Turns out the setons were healing on their own, without any tightening. So, they removed them. A bit of blood and a bit of pain for a day or two, but that is all gone now. The docs were AMAZED, as Jim and I were. I am so glad for him to be rid of them. They couldn't believe that they not only healed on their own, but in particular while Jim's immune system is so low.
This Thursday is the BIG day. It is day 28 after the stem cell and Jim will get a whole new bunch of tests, including the dreaded (or not) PET scan. After that, Jim comes home. He's been in the hopt. for so long, it will be so nice to have him out with me. The doctors said that he can go straight to Bob and Shelley's without having to stay at a hotel in Bethesda. At least that was the word last week. This is music to our ears. I would rather drive Jim back 3 days a week, then stay around there...out of a suitcase.
As for me, well, I went back to the lodge, despite me not wanting to. Shelley took care of me for 5 days while away from the lodge, and it was like heaven. You were right, Carol, to insist we come here. Despite me feeling bad, I see how much I really needed to be around family and someone so nurturing.
Well, as I said, I went to the lodge. I was so wiped out physically and emotionally from the idea of another packing and unpacking, I decided to bring very little. But that made me feel homeless. When I got to the lodge and unpacked, I discovered that I packed 2 different tennis shoes, both left feet, and that started yet another crying jag. The next day, my throat felt scratchy, but I wasn't sure if that was a cold starting, or just my throat hurting from the sleep apnea, which is soooooooooooo bad, it's a wonder I'm not dead. (No, I didn't bring my breathing machine. I forgot it in PGH when packing, not that it matters, as it's a rare night that I use it totally through the night.)
Anyway, it turns out it's a sore throat, and I have a full fledged cold. I only pray that I didn't give it to Jim yesterday after being with him, sharing Iced tea, and giving a few kisses. (stupid me) So, I left the lodge and came back "home" today. Their beds are sooooooooo bad, there is no way I could stay in bed all day getting well. I stayed in bed most of one day, and my back still hurts. So I'm home in my pj's with my Dayquil and NyQuil. I feel safe here. I don't feel lost and alone and homeless. But I feel bad for leaving my DH. I also hope that I'm well by Friday (probably won't be if you know me and colds) cause not only do I have to pick Jim up and go to a "so you're going home after a transplant" class, but I could get him sick if I haven't already.
Sorry about the last blog. Well, actually I'm not. I guess I'm sorry that it sends people scrambling in all kinds of directions to want to aid me. All kinds of ideas out there about what was going on. As I re-read it, I saw myself that I mentioned living out of a suitcase and being away from home more than anything, and that the doctors spoke in circles pointed to living out of a suitcase longer, well, it kind of just was the straw that broke...I wasn't mad at God or having a faith crisis. I was angry at the doctors and the whole darn thing. Hearing that Jim's cancer could come back is a no brainer, as we knew that. Like one of my fave hymns says, "my hope is built on nothing less, than Jesus' blood and righteousness." It's not on the docs, the cancer staying away, etc. I think I've mentioned this several times here, so I won't beat that horse to death again. I guess, to hear that the cancer could cause us to be away from home even longer than they said because of another transplant, well that one was new to me and very hard to hear and feel.
Pray requests are the same for Jim and I. I ask the Lord to lead some of you to pray for Bob and Shelley and their children as we stay with them. I know it's a sacrifice and I want them protected as well. The kids gave up their playroom so easy. Thanks.
US
I was actually enjoying not writing on the blog. But when I see "Canton Ohio" and many others checking and checking the blog, I felt badly cause I know you love us and want to know what is going on. I got your calls, MJ & June. I was answering my phone, it's just that there is no reception at the hospital, so I missed your calls. It was great to hear your voice and your declaration of love for me, as well. It made me cry.
Jim is doing well. He continues to have unexplained nausea. The docs were concerned and last Thursday did a CT scan. It showed no visual cancer growth. It actually showed the scar tissue area of the previous cancer had also shrunk. We don't know exactly when Jim was "cancer free" because "size" hadn't changed from after the second course of chemo. the PET scan is the very accurate way of measuring cancer. When it showed the cancer was in remission, it could have been since after the second chemo. Who knows. But at the very least, this CT scan shows that Jim has been in remission now for 6 weeks, which is pretty amazing.
They also did surgery on his backend. Turns out the setons were healing on their own, without any tightening. So, they removed them. A bit of blood and a bit of pain for a day or two, but that is all gone now. The docs were AMAZED, as Jim and I were. I am so glad for him to be rid of them. They couldn't believe that they not only healed on their own, but in particular while Jim's immune system is so low.
This Thursday is the BIG day. It is day 28 after the stem cell and Jim will get a whole new bunch of tests, including the dreaded (or not) PET scan. After that, Jim comes home. He's been in the hopt. for so long, it will be so nice to have him out with me. The doctors said that he can go straight to Bob and Shelley's without having to stay at a hotel in Bethesda. At least that was the word last week. This is music to our ears. I would rather drive Jim back 3 days a week, then stay around there...out of a suitcase.
As for me, well, I went back to the lodge, despite me not wanting to. Shelley took care of me for 5 days while away from the lodge, and it was like heaven. You were right, Carol, to insist we come here. Despite me feeling bad, I see how much I really needed to be around family and someone so nurturing.
Well, as I said, I went to the lodge. I was so wiped out physically and emotionally from the idea of another packing and unpacking, I decided to bring very little. But that made me feel homeless. When I got to the lodge and unpacked, I discovered that I packed 2 different tennis shoes, both left feet, and that started yet another crying jag. The next day, my throat felt scratchy, but I wasn't sure if that was a cold starting, or just my throat hurting from the sleep apnea, which is soooooooooooo bad, it's a wonder I'm not dead. (No, I didn't bring my breathing machine. I forgot it in PGH when packing, not that it matters, as it's a rare night that I use it totally through the night.)
Anyway, it turns out it's a sore throat, and I have a full fledged cold. I only pray that I didn't give it to Jim yesterday after being with him, sharing Iced tea, and giving a few kisses. (stupid me) So, I left the lodge and came back "home" today. Their beds are sooooooooo bad, there is no way I could stay in bed all day getting well. I stayed in bed most of one day, and my back still hurts. So I'm home in my pj's with my Dayquil and NyQuil. I feel safe here. I don't feel lost and alone and homeless. But I feel bad for leaving my DH. I also hope that I'm well by Friday (probably won't be if you know me and colds) cause not only do I have to pick Jim up and go to a "so you're going home after a transplant" class, but I could get him sick if I haven't already.
Sorry about the last blog. Well, actually I'm not. I guess I'm sorry that it sends people scrambling in all kinds of directions to want to aid me. All kinds of ideas out there about what was going on. As I re-read it, I saw myself that I mentioned living out of a suitcase and being away from home more than anything, and that the doctors spoke in circles pointed to living out of a suitcase longer, well, it kind of just was the straw that broke...I wasn't mad at God or having a faith crisis. I was angry at the doctors and the whole darn thing. Hearing that Jim's cancer could come back is a no brainer, as we knew that. Like one of my fave hymns says, "my hope is built on nothing less, than Jesus' blood and righteousness." It's not on the docs, the cancer staying away, etc. I think I've mentioned this several times here, so I won't beat that horse to death again. I guess, to hear that the cancer could cause us to be away from home even longer than they said because of another transplant, well that one was new to me and very hard to hear and feel.
Pray requests are the same for Jim and I. I ask the Lord to lead some of you to pray for Bob and Shelley and their children as we stay with them. I know it's a sacrifice and I want them protected as well. The kids gave up their playroom so easy. Thanks.
US
Wednesday, March 11, 2009
Ummmmm,geeze
I ahhhh, kind of don't know what to say, we all were so happy about what I wrote before. I just got off the phone with Jim, and I'm sitting here at 10:30 ready to jump out of my skin. He talked to his doctor and the doctor said according to the blood tests, Jim is 85 percent engrafted. That means it is HIGHLY unlikely that he will lose this transplant, that his body won't reject it. Which is great news. So, then, Jim says to the doctor, "but I'm still scared about the cancer coming back." The doctor said. Don't worry about it................I expect the cancer to come back. You're cancer is very hard to cure. We got plans, we'll do another transplant or more chemo....WHAT?????????????????
And then I'm silent and Jim wants to know what's wrong. Uh, geeze, Hon.... Nothing. I thought there was a 20 to 50 percent chance you would make it beyond 6 months, not 6 weeks. Um, I only thought I would have to live out of a suitcase for a few more months, not a few more years. um, I'm fighting for my life, too, you know. Um.... The words, "I expect" it to come back are no where near the 20 percent chance they spoke of before. And it doesn't line up with 3 more months away from home, either. What they should have said was, "we think it will be almost zero percent chance the cancer won't come back, but we can prolong his life, but you'll be living in and out of this hospital and lodge and hotels for the rest of it. I would have still done it, but NOT IN FREAKING DENIAL OF HAVING ANY QUALITY OF LIFE.
I'm so sick and tired of all of this. I think we need to just move here and sell the house. Seriously. I can't live like this. I'm already counting the days before we can go home, and Jim's not even out of the hospital yet. And now this???? "You'll have to live here 4 months after the transplant" is not even CLOSE to how long we'll be here if they "expect" the cancer to come back. I'm so damn angry. "We'll do another SCT??????" Oh, really. And what.... you think you might have wanted to mention that little fact tous before we asked a 60 some year old man who lives in the mid west, on his way to retirement to participate? "Oh, by the way Bob, you'll be coming here the rest of your life, too." Oh, and you'll have to give yourself more shots, and give us more cells. And you'll have to go home exhausted and fly in and fly out and fly in and fly out ...Come on, people. That's just not fair. Give people the whole deal.
Sorry to get you all excited folks. It was nice to hear from Mary and John, and Johnny and Leah want to go biking, and....WELL, EXCUSE ME, BUT THAT STUFF IS FOR NORMAL PEOPLE. People with lives. So, no. I'm not going bike riding. I try to ride a bike to get exercise, and 3 weeks past before it happens again. I try to do a bible study, and 2 weeks pass before I unpack it from the suitcase, you know, the suitcase that is constantly opening and closing as I carry it in and out of places.
Oh, I'm so damn mad, if I weren't at Bob and Shelley's, I would probably be throwing china right now. And I've never done that.
Oh, and just for toppers, Jim's surgery will be tomorrow at 8 a.m. or Friday. What's that? Geeze, pick a day already... Oh, wait, why pick a day???? Nothing ever happens the way they say it anyway.
Unbelievable.
And you know what. This isn't the first time I've posted their BS they have given to me, to have to change it and change it and change it. So, I'm done. I'm sick of reporting something and it changing to something else and it changing to something else.
The end.
And then I'm silent and Jim wants to know what's wrong. Uh, geeze, Hon.... Nothing. I thought there was a 20 to 50 percent chance you would make it beyond 6 months, not 6 weeks. Um, I only thought I would have to live out of a suitcase for a few more months, not a few more years. um, I'm fighting for my life, too, you know. Um.... The words, "I expect" it to come back are no where near the 20 percent chance they spoke of before. And it doesn't line up with 3 more months away from home, either. What they should have said was, "we think it will be almost zero percent chance the cancer won't come back, but we can prolong his life, but you'll be living in and out of this hospital and lodge and hotels for the rest of it. I would have still done it, but NOT IN FREAKING DENIAL OF HAVING ANY QUALITY OF LIFE.
I'm so sick and tired of all of this. I think we need to just move here and sell the house. Seriously. I can't live like this. I'm already counting the days before we can go home, and Jim's not even out of the hospital yet. And now this???? "You'll have to live here 4 months after the transplant" is not even CLOSE to how long we'll be here if they "expect" the cancer to come back. I'm so damn angry. "We'll do another SCT??????" Oh, really. And what.... you think you might have wanted to mention that little fact tous before we asked a 60 some year old man who lives in the mid west, on his way to retirement to participate? "Oh, by the way Bob, you'll be coming here the rest of your life, too." Oh, and you'll have to give yourself more shots, and give us more cells. And you'll have to go home exhausted and fly in and fly out and fly in and fly out ...Come on, people. That's just not fair. Give people the whole deal.
Sorry to get you all excited folks. It was nice to hear from Mary and John, and Johnny and Leah want to go biking, and....WELL, EXCUSE ME, BUT THAT STUFF IS FOR NORMAL PEOPLE. People with lives. So, no. I'm not going bike riding. I try to ride a bike to get exercise, and 3 weeks past before it happens again. I try to do a bible study, and 2 weeks pass before I unpack it from the suitcase, you know, the suitcase that is constantly opening and closing as I carry it in and out of places.
Oh, I'm so damn mad, if I weren't at Bob and Shelley's, I would probably be throwing china right now. And I've never done that.
Oh, and just for toppers, Jim's surgery will be tomorrow at 8 a.m. or Friday. What's that? Geeze, pick a day already... Oh, wait, why pick a day???? Nothing ever happens the way they say it anyway.
Unbelievable.
And you know what. This isn't the first time I've posted their BS they have given to me, to have to change it and change it and change it. So, I'm done. I'm sick of reporting something and it changing to something else and it changing to something else.
The end.
Still no surgery
Hi Everyone:
Well, there is still no surgery. So...
Also, still no GVHD. So....
Finally Jim got to talk to the lead principal in his study, and this doctor (who is wonderful) (T&J, it's the man that Zetta works for. You know how wonderful she is...well, he's 10 times more so, imagine that.) Anyway, I wanted Jim to ask about this:
As I mentioned before, you want some GVHD because it means the new immune system is taking over, and that GVTE (graft versus tumor effect) is happening. What I didn't understand was, how could there be graft versus tumor, if there isn't any tumor, and if Jim isn't having GVHD, does that mean Bob's immune system isn't working for him. And they are taking JIm off the one med which protects from GVHD, what about that... So, here's what he said.
Many people have SCTs that are effective and never have a hint of GVHD. PRAISE THE LORD FOR THAT.!!!!!!!!!! Jim can't get GVTE because HE DOESN'T HAVE A TUMOR...PRAISE THE LORD FOR THAT!!!!!!!!!!! They think Jim is doing "wonderful." PRAISE THE LORD FOR THAT!!!!!!!!! And the other medicine that Jim is getting, can alone keep the GVHD at bay, despite taking the other medicine off of him. PRAISE THE LORD FOR THAT.!!!!!!!!!!!!
And they think that Jim's probably 50 to 80 percent engrafted with Bob's immune system. PRAISE THE LORD FOR THAT!!!!!!!! Which means, Jim is starting to look like Bob, sound like Bob. It won't be long before Jim signs his name on the deed for Bob's boat and cottage on the lake. Bob, very soon you can just direct deposit your pay into Jim's account. And this also means that we get Carol, too. I've always said I needed a wife, someone to take care of me, like I take care of Jim. This is getting too exciting. I'm already living with your son and daughter, and trying to spoil your grandchildren. Imagine when Jim's 100 percent engrafted. ;)
Yeah, there are still those minutes, hours, days of chaos and problems, and we are tired and worn out, but the big issues THE BIG ISSUES, right now are PERFECTLY ALIGNED. It makes the other issues doable. And yeah, everything can change in a heart beat, but I wanted to at least tell all of you all of this because it's really heading in the right direction, and that is very goodly.
Well, there is still no surgery. So...
Also, still no GVHD. So....
Finally Jim got to talk to the lead principal in his study, and this doctor (who is wonderful) (T&J, it's the man that Zetta works for. You know how wonderful she is...well, he's 10 times more so, imagine that.) Anyway, I wanted Jim to ask about this:
As I mentioned before, you want some GVHD because it means the new immune system is taking over, and that GVTE (graft versus tumor effect) is happening. What I didn't understand was, how could there be graft versus tumor, if there isn't any tumor, and if Jim isn't having GVHD, does that mean Bob's immune system isn't working for him. And they are taking JIm off the one med which protects from GVHD, what about that... So, here's what he said.
Many people have SCTs that are effective and never have a hint of GVHD. PRAISE THE LORD FOR THAT.!!!!!!!!!! Jim can't get GVTE because HE DOESN'T HAVE A TUMOR...PRAISE THE LORD FOR THAT!!!!!!!!!!! They think Jim is doing "wonderful." PRAISE THE LORD FOR THAT!!!!!!!!! And the other medicine that Jim is getting, can alone keep the GVHD at bay, despite taking the other medicine off of him. PRAISE THE LORD FOR THAT.!!!!!!!!!!!!
And they think that Jim's probably 50 to 80 percent engrafted with Bob's immune system. PRAISE THE LORD FOR THAT!!!!!!!! Which means, Jim is starting to look like Bob, sound like Bob. It won't be long before Jim signs his name on the deed for Bob's boat and cottage on the lake. Bob, very soon you can just direct deposit your pay into Jim's account. And this also means that we get Carol, too. I've always said I needed a wife, someone to take care of me, like I take care of Jim. This is getting too exciting. I'm already living with your son and daughter, and trying to spoil your grandchildren. Imagine when Jim's 100 percent engrafted. ;)
Yeah, there are still those minutes, hours, days of chaos and problems, and we are tired and worn out, but the big issues THE BIG ISSUES, right now are PERFECTLY ALIGNED. It makes the other issues doable. And yeah, everything can change in a heart beat, but I wanted to at least tell all of you all of this because it's really heading in the right direction, and that is very goodly.
Tuesday, March 10, 2009
Day 19...the hard life
Hi Everyone:
Well, I am at Bob and Shelley's, and I have my own craziness going on, trying to set up a "home away from home" getting the bed situation in order, shopping for sheets and things that I need, trying to clean so that it can be "germ free" for Jim, despite the hopt. floors being the pits...(not to mention playing games with the kids and staying up until 5 a.m. for girl talk with Shelley. And we probably would have continued if Bob didn't have to get up for work... I think I've done more game playing with the kids than cleaning or anything else either. But I promise Hon. I'll get the work done.
But the "hard life" medal winner again, is Jim. Long story short. He was to go into surgery for the setons, to see what was up. So, 2 days ago at midnight, he starts his fast. But before that, he needed to get platelets at 9 pm and again at 3 am to be ready for surgery. So, the next morning, they wanted his platelet count higher, so they gave him more, and put off surgery for an hour or two. And each time they do this, he has to take benedryl so he doesn't have an alergic reaction. Benedryl with no food and water is very hard. So, they test the blood again. They now want to give him red blood cells, so they give them him. It's now 1 pm and no surgery. And 2 and 3 and 4...They finally tell him there is not gonig to be any surgery, with no reasons why. Again. it's totally the left hand doesn't know what the right hand is doing. It's like he's a mushroom. He's kept in the dark and fed horse manure. So, it's now 6 p.m. and they tell him they can break his fast. He calls to order food and the cafe tells him, No, you're NPO (nothing by mouth) He insists, they hang up on him. This happened 3 times. Meanwhile, he ends up having 5 mins to place an order before cafe closes, and they are hanging up on him,not listening, and the nurses aren't responding to his call button, yada yada yada. And it was just emotionally taxing on Jim. Of course he's not told to fast again at midnight, and his SCT team of docs, come in this morning, perplexed as to why not only did he no get the surgery yesterday, but why then aren't they doing it today. If they decide to do it tomorrow. Guess what....He'll probably need more platelets. HELLO... And the surgery team is no where to be found or heard of, and nobody knows what is going on.
I'm feeling a bit bad that I'm not there taking care of the situation, but I have about just as much power, so I guess that really doesn't matter, but emotionally I feel bad.
We still don't know when the surgery will take place. On top of that, we don't know what they are doing in the surgery, or anything about it.
They also took Jim off the one GVHD med because it's messing with his kidney But they don't come in and discuss this. Nurses come in with meds, and Jim asks, where's the cyclosporin .... "Oh, they are cutting that because of your kidney numbers." And off they go. Well, what the heck does that mean. Why didn't the docs tell me. And vice versa. Nurses come with meds and there's 2 new ones, with no rhyme or reason or explanation. Despite Jim previously having been on one of those meds with bad side effects. Sigh.
Still pray.
I'm off to the hardware store for the plywood they are cutting for me.
Well, I am at Bob and Shelley's, and I have my own craziness going on, trying to set up a "home away from home" getting the bed situation in order, shopping for sheets and things that I need, trying to clean so that it can be "germ free" for Jim, despite the hopt. floors being the pits...(not to mention playing games with the kids and staying up until 5 a.m. for girl talk with Shelley. And we probably would have continued if Bob didn't have to get up for work... I think I've done more game playing with the kids than cleaning or anything else either. But I promise Hon. I'll get the work done.
But the "hard life" medal winner again, is Jim. Long story short. He was to go into surgery for the setons, to see what was up. So, 2 days ago at midnight, he starts his fast. But before that, he needed to get platelets at 9 pm and again at 3 am to be ready for surgery. So, the next morning, they wanted his platelet count higher, so they gave him more, and put off surgery for an hour or two. And each time they do this, he has to take benedryl so he doesn't have an alergic reaction. Benedryl with no food and water is very hard. So, they test the blood again. They now want to give him red blood cells, so they give them him. It's now 1 pm and no surgery. And 2 and 3 and 4...They finally tell him there is not gonig to be any surgery, with no reasons why. Again. it's totally the left hand doesn't know what the right hand is doing. It's like he's a mushroom. He's kept in the dark and fed horse manure. So, it's now 6 p.m. and they tell him they can break his fast. He calls to order food and the cafe tells him, No, you're NPO (nothing by mouth) He insists, they hang up on him. This happened 3 times. Meanwhile, he ends up having 5 mins to place an order before cafe closes, and they are hanging up on him,not listening, and the nurses aren't responding to his call button, yada yada yada. And it was just emotionally taxing on Jim. Of course he's not told to fast again at midnight, and his SCT team of docs, come in this morning, perplexed as to why not only did he no get the surgery yesterday, but why then aren't they doing it today. If they decide to do it tomorrow. Guess what....He'll probably need more platelets. HELLO... And the surgery team is no where to be found or heard of, and nobody knows what is going on.
I'm feeling a bit bad that I'm not there taking care of the situation, but I have about just as much power, so I guess that really doesn't matter, but emotionally I feel bad.
We still don't know when the surgery will take place. On top of that, we don't know what they are doing in the surgery, or anything about it.
They also took Jim off the one GVHD med because it's messing with his kidney But they don't come in and discuss this. Nurses come in with meds, and Jim asks, where's the cyclosporin .... "Oh, they are cutting that because of your kidney numbers." And off they go. Well, what the heck does that mean. Why didn't the docs tell me. And vice versa. Nurses come with meds and there's 2 new ones, with no rhyme or reason or explanation. Despite Jim previously having been on one of those meds with bad side effects. Sigh.
Still pray.
I'm off to the hardware store for the plywood they are cutting for me.
Saturday, March 7, 2009
Who knows what day...I've lost count
Jim is doing okay. He doesn't seem to be heading in one direction or another. I guess his blood numbers are getting better, but he seems to be stuck in this place of just painful existence. It's horrible. And yet, he's doing good. I don't know how to balance that in my mind, but that's the way that it is. Just keep praying for him. His fingernails were purple today because the neuropathy is so bad that his blood circulation is affected and...One thing I can say is that live or die, our lives will never be the same. In some ways that makes it hard to relate to anybody. Not many get the "privilege" of walking this path Jim and I are on. Even the families at the lodge. I haven't met one person who has gone through what we have gone through. I know they're out there, but it's not common, that's for sure. Well, I'm too tired to get into all of that.
Want to know why I'm tired? Well, yesterday felt like "life" so I wanted a bit more. So. I went biking again today. Yesterday I did 13 miles. It just felt like 20. Today....oh my....
Well, I took the bike onto the metro. (Yes, Rege and Bob, you can take the bike on the metro, as I mentioned. Just not during peak travel time. Anyway, I put the bike onto the metro and took off. And guess where I went...
Well, you got that right. I went to China. WELL I MIGHT AS WELL HAVE. That rocky creek park trail isn't that well marked. It's beautiful and it was a beautiful day. For many miles of that trail, they close the road on weekends for cyclists and walkers. I've never seen so many people out and about. I won't bore you with how I got lost and probably biked close to 30 miles. Or how when I finally got to lay down in Jim's bed at the hopt. the tv bumped into the tray and spilled ice water and iced tea all over me and the bed. But suffice it to say that I no longer feel like I experienced "life" today. LOL. More like death.
And what does Leah Belle want to know....if I'll go biking and to the zoo again, when they come.
Well, you bet I will. :) But, girl, tell me, how do you run 26.5 miles in a marathon.
Tomorrow I check out. I hope I can walk. I'm serious. It's not like I'm in great shape or anything. Sitting in hopt. rooms, has kept me out of the gym circuit, and I'm a bit out of shape, so we'll see.
Well, yesterday I mentioned that my galanthus were probably blooming and I was missing them and guess what I saw on the trail. You got it.
Friday, March 6, 2009
Day 15
First and foremost. My 27 days are up at the Lodge in 2 days. Do not send any mail to me there, as they will not hold it. I will be back at the lodge in 6 days.
Well, Jim got his booster cells. It was very anticlimatic, like the SCT day, but even more so, as it was only about 30 milliliter's of fluid. But that wasn't all cells, it was a bunch of other stuff. Probably only a small test tube worth of specific stem cells were in that batch. They were T cells.
(Joe, they were frozen in DMSO, and there was definately a garlic, corn flavor smell coming from Jim for about 24 hours, which kind of tells us that rubbing it into the skin doesn't carry through to the bloodstream.)
In that tablespoon of Stem cells, however, there were 2.15 billion stem cells. That's a lot, isn't it.
Jim's doing okay. His neuropathy is really bad though. It's not that he's just numb. He's numb and in pain. And it's very bad pain. I just feel bad for him. He can't get a break.
Today he looked at the little slide show that I have linked on this page of our fall before he got sick, when we were at the cottage, and that really got him going. He saw how much heavier he was and he saw himself when he was feeling well. And he longs for that so much, and it made him very sad. He's okay. It's good for him to feel all that and get it out. I just hope the roller coaster ride comes to an end for him.
Yesterday, I was a beast. I thought I was going to go nuts sitting in this cage. I spoke to Jim about some changes that I need to make, so that was good. So, the weather was a bit warmer today, and one of those changes was doing something that I really like and enjoy, and I decided to take a bike ride. I was only going to ride around the "compound." But as I pedaled up the hill towards the security gate, I asked the police officer if there was a sidewalk out there, and he said yes, and I was off. Before I know it, I was headed towards Bethesda. I drove all through the streets there, and then drove to the Crescent something or other bike trail. I road that almost into Washington DC, but realized this was the first time out, and 15 to 20 miles of biking was plenty. I already can feel the bike butt syndrome. Jim won't be the only one with a sore bottom tomorrow. Tomorrow, I am going to pick up where I left off. I am going to take the bike into the van, get on the bike path, and ride down into DC. I'm going to go onto Washington Memorial Parkway (beautiful) and drive through there. When I come back to the lodge six days from now, I am going to take the crescent trail in the opposition direction though Chevy Chase onto the rocky something or other bike trail and park the bike and go to the National Zoo and finally see the panda bears. I've wanted to see them every since my cousin Norma went to see them years ago. I've been trying to get there to see them every since we came. I've thought of my cousin Norma alot lately. She was a beautiful woman and I loved her. Cancer stole many years and many things from her.
I told Jim that today was the first day that I have felt alive since last summer. But actually that's not true, because last summer, I had very little hope of Jim being alive, and my understanding in hoping in God alone wasn't as fine tuned as it is now, so I was reacting more to the emotional swing of things, rather than responding. And since I can chose my response, it's more healthy. AND, it is easier also having some hope that maybe Jim will make it through this, too.
I really enjoyed my bike ride. Of course, all I could think about as I saw bamboo, and little streams was, "Wow, Jim would love this." If Jim were here, we would stop and have to go see if there are helgies under those rocks. If Jim were here... I petted a few dogs, saw some beautiful homes, etc.
On the way home, I stopped at the Giant grocery store. It's very similar to Giant Eagle. I bought a rotisserie chicken, some linguine sesame noodles and some iced tea, plopped them in my basket and off I went back here to the NIH where Jim and I had dinner together. I was a much happier camper today having got out to do something that I loved. John had checked my bike over before I came down, and I had my handy pump and tire repair kit, in case, but no mishaps, so that was good.
Well, I'm going to help my Jumbo get ready for bed.
On Monday, they are putting Jim under anesthesia and going to check out his seton surgery site. They need to start tightening this and getting these strings out of there, so he can be done with this. They want to see what is going on.
Well, I know the weather is getting warm at home, too. In fact maybe nobody is reading this because you are all outside. I am going to miss my home really bad this spring. I know that my galanthus are blooming now, soon to be followed by my purple bells. I planted a bunch of mini daffs in the front yard last fall, with some special purple bulb that I forgot the name of. They will bloom together. I put these under the Harry Lauder's Walking Stick in the front yard, and it's going to look beautiful, I know. Me and Leah planted them. Hey, sister, take a pic in April when they bloom and send them to me, so I can send them to Leah Belle. (Her name is Leah Joy, but for some reason at some point, Leah Belle popped out, and that's what I call her, but not to her face. I love her middle name, but I'm weird, and Leah Joy Belle just didn't sound right, so...) Okay anyway. I also bought a crab apple tree last year that is going to bloom like crazy and I'm sad that I am going to miss that.
But you know what. I hear the cherry trees in Washington are beautiful. :) I've always wanted to see them. And I got my bike.
Well, Jim got his booster cells. It was very anticlimatic, like the SCT day, but even more so, as it was only about 30 milliliter's of fluid. But that wasn't all cells, it was a bunch of other stuff. Probably only a small test tube worth of specific stem cells were in that batch. They were T cells.
(Joe, they were frozen in DMSO, and there was definately a garlic, corn flavor smell coming from Jim for about 24 hours, which kind of tells us that rubbing it into the skin doesn't carry through to the bloodstream.)
In that tablespoon of Stem cells, however, there were 2.15 billion stem cells. That's a lot, isn't it.
Jim's doing okay. His neuropathy is really bad though. It's not that he's just numb. He's numb and in pain. And it's very bad pain. I just feel bad for him. He can't get a break.
Today he looked at the little slide show that I have linked on this page of our fall before he got sick, when we were at the cottage, and that really got him going. He saw how much heavier he was and he saw himself when he was feeling well. And he longs for that so much, and it made him very sad. He's okay. It's good for him to feel all that and get it out. I just hope the roller coaster ride comes to an end for him.
Yesterday, I was a beast. I thought I was going to go nuts sitting in this cage. I spoke to Jim about some changes that I need to make, so that was good. So, the weather was a bit warmer today, and one of those changes was doing something that I really like and enjoy, and I decided to take a bike ride. I was only going to ride around the "compound." But as I pedaled up the hill towards the security gate, I asked the police officer if there was a sidewalk out there, and he said yes, and I was off. Before I know it, I was headed towards Bethesda. I drove all through the streets there, and then drove to the Crescent something or other bike trail. I road that almost into Washington DC, but realized this was the first time out, and 15 to 20 miles of biking was plenty. I already can feel the bike butt syndrome. Jim won't be the only one with a sore bottom tomorrow. Tomorrow, I am going to pick up where I left off. I am going to take the bike into the van, get on the bike path, and ride down into DC. I'm going to go onto Washington Memorial Parkway (beautiful) and drive through there. When I come back to the lodge six days from now, I am going to take the crescent trail in the opposition direction though Chevy Chase onto the rocky something or other bike trail and park the bike and go to the National Zoo and finally see the panda bears. I've wanted to see them every since my cousin Norma went to see them years ago. I've been trying to get there to see them every since we came. I've thought of my cousin Norma alot lately. She was a beautiful woman and I loved her. Cancer stole many years and many things from her.
I told Jim that today was the first day that I have felt alive since last summer. But actually that's not true, because last summer, I had very little hope of Jim being alive, and my understanding in hoping in God alone wasn't as fine tuned as it is now, so I was reacting more to the emotional swing of things, rather than responding. And since I can chose my response, it's more healthy. AND, it is easier also having some hope that maybe Jim will make it through this, too.
I really enjoyed my bike ride. Of course, all I could think about as I saw bamboo, and little streams was, "Wow, Jim would love this." If Jim were here, we would stop and have to go see if there are helgies under those rocks. If Jim were here... I petted a few dogs, saw some beautiful homes, etc.
On the way home, I stopped at the Giant grocery store. It's very similar to Giant Eagle. I bought a rotisserie chicken, some linguine sesame noodles and some iced tea, plopped them in my basket and off I went back here to the NIH where Jim and I had dinner together. I was a much happier camper today having got out to do something that I loved. John had checked my bike over before I came down, and I had my handy pump and tire repair kit, in case, but no mishaps, so that was good.
Well, I'm going to help my Jumbo get ready for bed.
On Monday, they are putting Jim under anesthesia and going to check out his seton surgery site. They need to start tightening this and getting these strings out of there, so he can be done with this. They want to see what is going on.
Well, I know the weather is getting warm at home, too. In fact maybe nobody is reading this because you are all outside. I am going to miss my home really bad this spring. I know that my galanthus are blooming now, soon to be followed by my purple bells. I planted a bunch of mini daffs in the front yard last fall, with some special purple bulb that I forgot the name of. They will bloom together. I put these under the Harry Lauder's Walking Stick in the front yard, and it's going to look beautiful, I know. Me and Leah planted them. Hey, sister, take a pic in April when they bloom and send them to me, so I can send them to Leah Belle. (Her name is Leah Joy, but for some reason at some point, Leah Belle popped out, and that's what I call her, but not to her face. I love her middle name, but I'm weird, and Leah Joy Belle just didn't sound right, so...) Okay anyway. I also bought a crab apple tree last year that is going to bloom like crazy and I'm sad that I am going to miss that.
But you know what. I hear the cherry trees in Washington are beautiful. :) I've always wanted to see them. And I got my bike.
Wednesday, March 4, 2009
Day 13
Well, we're one day from the booster transfusion of the SCT. I think Jim will get close to 1 million T-cells that were donated from Bob on the first day he came here. The booster helps jumpstart Jim's previously received stemcells. I think. I also think they were treated in something. I'm not sure. It's very hard to get detailed information here. I will try to find out, for those who like the nitty gritty, like we do.
The doctors are considering taking Jim off of the trial drug that minimizes the GVHD asap because of Jim's neuropathy. It's getting so bad that he feels the numbness now up into his shoulders. Even his lips have some numbness.
But that hasn't stopped him from dancing.
I wanted to clarify that when Jim saw that spot in his hand, thinking it was some GVHD, it wasn't a "oh no, I'm getting some GVHD" with a negative slant. He actually does want to get some GVHD. The reason is that it tells the doctors that the body is recognizing the donated cells and that they are taking over. You want what is called GVT or Graft Versus Tumor effect, and some GVHD points to that. I wonder...how can there be graft versus tumor, if there is no tumor. I'm telling you what. This is all so very confusing. Like I said, it's hard to get detailed information here. Some people don't want information. But we do. And the more questions I have, the more questions get added to the list. Inquiring minds want to know. I should have been a doctor. No a scientist. But I would have been one of those obsessed types that would never want to stop experimenting, trying to find, "the answer." I guess most scientists probably go through that, and learn to balance that type of compulsion. Sorry, I digress.
I did figure out how to explain this question that I have received from some of you. A stem cell transplant is the same thing as a bone marrow transplant. Both of them change the immune system, and they do that through the bone marrow. Some hospitals use bone marrow to do that, some use stem cells. Stem cell donation is much less painful for the donor. So, instead of taking the bone marrow out of the donor, it just takes the stem cells out of the blood that creates the immune system in the bone marrow. Then those stem cells travel into the bone marrow to modify it.
Jim got a letter from Bob stating that he's doing well. I appreciate your prayers for him as well. He says he's still feeling a bit tired and the NIH told him to lay off the gym for a while, but it was good to hear that. I know Jim has been worried. If I know him, probably feeling guilty or putting his brother through that.
Well, here are the standings after day 12. As you can see J.B. is still in the lead. Norton and Harry are trying to stay in step with Jim, but he keeps them in the dust. Candace and LWP are trying to keep up, too. But poor patsy. She's still lagging behind. But I have to say. Jim better do as little less of dancing the jig and a bit more of regular laps.
With the neuropathy, we are actually pleased that he can even walk because he can't feel his legs. He uses a walker, of course, but who cares. I wonder if the other contestants use walkers???? I mean if they don't, is Jim really ahead?
Oh shut my mouth!!! I did NOT just say that, did I?
;)
The doctors are considering taking Jim off of the trial drug that minimizes the GVHD asap because of Jim's neuropathy. It's getting so bad that he feels the numbness now up into his shoulders. Even his lips have some numbness.
But that hasn't stopped him from dancing.
I wanted to clarify that when Jim saw that spot in his hand, thinking it was some GVHD, it wasn't a "oh no, I'm getting some GVHD" with a negative slant. He actually does want to get some GVHD. The reason is that it tells the doctors that the body is recognizing the donated cells and that they are taking over. You want what is called GVT or Graft Versus Tumor effect, and some GVHD points to that. I wonder...how can there be graft versus tumor, if there is no tumor. I'm telling you what. This is all so very confusing. Like I said, it's hard to get detailed information here. Some people don't want information. But we do. And the more questions I have, the more questions get added to the list. Inquiring minds want to know. I should have been a doctor. No a scientist. But I would have been one of those obsessed types that would never want to stop experimenting, trying to find, "the answer." I guess most scientists probably go through that, and learn to balance that type of compulsion. Sorry, I digress.
I did figure out how to explain this question that I have received from some of you. A stem cell transplant is the same thing as a bone marrow transplant. Both of them change the immune system, and they do that through the bone marrow. Some hospitals use bone marrow to do that, some use stem cells. Stem cell donation is much less painful for the donor. So, instead of taking the bone marrow out of the donor, it just takes the stem cells out of the blood that creates the immune system in the bone marrow. Then those stem cells travel into the bone marrow to modify it.
Jim got a letter from Bob stating that he's doing well. I appreciate your prayers for him as well. He says he's still feeling a bit tired and the NIH told him to lay off the gym for a while, but it was good to hear that. I know Jim has been worried. If I know him, probably feeling guilty or putting his brother through that.
Well, here are the standings after day 12. As you can see J.B. is still in the lead. Norton and Harry are trying to stay in step with Jim, but he keeps them in the dust. Candace and LWP are trying to keep up, too. But poor patsy. She's still lagging behind. But I have to say. Jim better do as little less of dancing the jig and a bit more of regular laps.
With the neuropathy, we are actually pleased that he can even walk because he can't feel his legs. He uses a walker, of course, but who cares. I wonder if the other contestants use walkers???? I mean if they don't, is Jim really ahead?
Oh shut my mouth!!! I did NOT just say that, did I?
;)
Tuesday, March 3, 2009
late night, day 12
Well, this prayer request is for me. I have NO IDEA what I did, my lower back hurts so much I almost can't move. So, pray for me.
Thanks guys.
Thanks guys.
Day 12 continued
Hi Everyone:
Well, I think it's a false alarm on that GVHD "spot" that Jim saw.
Here is a picture of someone with GVHD of the skin.
Here is a picture of Jim's "spot."
For those of you who don't know, my husband did research prior to his illness. He always said that he has great skill in observing the smallest details. Well..., I concur. He sure does. I don't think it's GVHD, but I'll tell you one thing, if it is the start of it, Jim will be on top of it, letting the docs know of any subtle change. I don't think there is anything they can do to stop it. I think they can take prednisone to help with itch and such. I don't have to worry about Jim not catching it early, that's for sure.
Okay, that scare is over.
As I was saying. It's day 12. In 2 days, it will be day 14. That is the day that Jim will get his "booster" transfusion of more of Bob's cells. The Principal Research Doctor was here today and he thinks Jim is doing well. He said he wouldn't be surprised if Jim is 50 to 80 percent grafted already. That means Bob's immune system is over taking Jim's 50 to 80 percent. 50 would be great. 80 would be outstanding. They test in 2 days to see how far he has come. I will let you know. It's exciting to get the booster cells, too. To make it to "booster" without any problems is very cool.
The surgeon was in today, and they examined Jim's bottom and they say that he's doing well, and Jim is doing a good job taking care of it. It's causing him lots of pain though. They don't want to do anything until after the booster. They will then put him under twilight and go on in and look to see what is happening and such. They said that they wouldn't be surprised if Jim would go home some time next week. But they aren't part of his team, so we can't go by what they say. They scared Jim big time. Understandably, considering he can barely walk....except when there is a contest, of course, and Jim refuses to be last. :)
Stay tuned...
Day 12
Well, it's day 12. That means...oh wait. Jim is in the bathroom and I hear,"I think I'm getting my first graft versus host disease symptom. I said, "what." He said, "I see a spot." A spot? A spot of what? LOL....You have no idea, people, what it's like being married to a Baldauff, unless you're Carol, Jeannie, Mary Jo and Judy. Huh, gals.... (they, too are married to Baldauffs). It's a wonderful blend of bliss and ...well, I have to go see what's up. BRB.......
Monday, March 2, 2009
Day 11
Well, it's early day 11, so I have no idea what it holds, but the last few days have been....crazy? Who knew...
Jim was feeling better and deciding to do some laps.
As you can see, "JB" refuses to be lapped by another sicko, so he did 10 laps a few days ago to be in the lead. Not to mention the 30 leg slides and 30 leg lifts he did in bed. Well, he paid for that. The next day he thought he was dying. He felt weird. So much so that they docs came in and ordered extra tests and such because he was feeling so bad. He insisted something was wrong. (other than the marathon, Jim? I don't think so.) He even looked online for side effects of meds he's on. I simply told him, that the drugs he's on, the cancer, the SCT, they can kill you. NEXT... (all people in research should stay off the internet) Well, the docs concur. You over did it Jim. So, he was horizontal the next day and needed a platelet transfusion. He had an allergic reaction to that and his eyes puffed up. One day the blood is excellent, the next day it's horrible. The butt continues to be a big..well, pain in the butt. The docs checked it out, and when they put the gauze back in, they smash the string braids...well, let's just say they don't do it as well as I do, and they irritated him, causing him lots of pain. And they give him 3gms of IV Dilauded. So, it's a big circle of care.
Throughout this all, his appetite continues to remain stronger. And that is good. I've been cooking a bit at the lodge, but it's hard to transport warm food with no supplies, but it gives him a break from Hopt. food.
We've been playing Carcasonne online against each other (I have more experience than him) and he's getting pretty good. It won't be to long where I'll have to be defending myself, fighting for my life. Jim thinks I'm competitive. Well, after seeing the lap board, and watching his Carcasonne score get higher and higher each game, it will be no time, before I"m left in the dust there. And when I try to steal his City (game talk) he gets madder than HE double hockey sticks. That's a good sign.
Day 10 showed no GVHD for those who were wondering. We did find out though that they will give Jim another PET scan on the 28th day to see if there is any cancer growing back. That's 17 days from now, so that's probably a good time.
I've been having a very hard time lately. I am sooooooooooooo done with the hospital, the lodge, everything about Jim's sickness. I remember when my dad was in the hospital for 2 weeks, and my sister and I would take turns each day to be with him, staying maybe 4 hours each. IT WAS HECK. Terrible. Well, I guess that was a warm up for this. But I'm overdone. I have to reassure Jim this has nothing to do with him and my love for him. But I just can't stand it anymore. Everyone else down here has someone with them. I have to laugh when I hear 2 women sit at the kitchen, complaining about how hard it is, and they've been at it for 2 months now. And then their loved one with cancer walks in....all by himself. And he's able to stay at the lodge for a day or two. I guess this validates my feelings, not that I need validation, but... Today I prayed for deliverance not only for Jim but for me too. I have one more week here at the Lodge before I'm booted out. I'm going to Bob and Shelley's because my charge is too high from previous hotel costs, and I'm not paying that anymore, AND...I need a change. I need to be away from the hospital setting. To walk around a neighborhood, to feel like life has something else to offer but what it has in the last 20 months. I know it would help me soooooo much if my sister could be here, but alas, she has to take care of my dad, so. Anyway. All of that moaning just to say, this is the first morning in a long time that I have woken up and just wanted to run away to anywhere else. But unless I can take my Jumbo with me, I won't. But God, I need something extra.
If me wanting to call it quits is too hard for some of you to read, feel free to stay away and go read some other blog. In fact, I insist. Go. I suggest the "Oh, I'm fine" blog, authored by Rebecca from Sunnybrook Farms. :)
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