Thursday

Hello:

Today was a pretty good day. Jim's toe is finally feeling better. He actually walked 3 or 4 laps today, so that was pretty exciting. Jim's appetite is up, too. I drove a very long way to get him the best gyro in the world, and it was goodly. And he ate the whole thing.

Jim's blood is doing well. I mean it's very poor, but it's good poor. He's only mostly dead. :) He's not neutropenic which is good for infection purposes. He's getting his strength back, too.

I think this is day 7 post transplant, and they say day 10 is when GVHD can start. I mean it can happen anywhere from 10 days up to years later, so it's not like we are sitting around waiting for that. GVHD is actually 2 diseases, I have learned. Below is some info about GVHD if you want to know some.

• Acute GVHD usually occurs during the first three months following an allogeneic SCT. "T-cells present in the donor's bone marrow at the time of transplant identify the SCT patient as "non-self' and attack the patient's skin, liver, stomach, and/or intestines. The earliest sign of acute GVHD is often a skin rash that usually first appears on the patient's hands and feet."
• Chronic GVHD usually develops after the third month post-transplant. "Scientists believe that new T-cells produced after the donor's stem cells have engrafted in the patient may cause chronic GVHD. ""Chronic graft-versus-host disease (GVHD) is the most serious and common long-term complication of allogeneic hematopoietic stem cell transplantation (HCT), occurring in 20% to 70% of people surviving more than 100 days.

"Chronic graft-versus-host disease (GVHD) is the most serious and common long-term complication of allogeneic hematopoietic stem cell transplantation (HCT), occurring in 20% to 70% of people surviving more than 100 days.1,2 Approximately half of affected people have 3 or more involved organs, and treatment typically requires immunosuppressive medications for a median of 1 to 3 years. Because of higher treatment-related (nonrelapse) mortality, chronic GVHD remains the major cause of late death despite its association with a lower relapse rate.

The trial that Jim was a part of was not a trial of a new way to do a SCT. It is actually for the drugs that he is getting to eliminate the GVHD. Also, because Bob was a 6 for 6 match, that makes the chances of getting GVHD less, as well. MUCH LESS. So, we really aren't too concerned about Jim getting a severe case of this disease. Also, I have to say if Jim does get it, I can think of no better place for him to get treatment than here. It's amazing what I don't worry about any more. Seriously. It's so freeing.

Here's a brief description of what will happen beginning in 1 more week.

• After entering the blood stream, the stem cells travel to the bone marrow, where they begin to produce new white blood cells, red blood cells, and platelets in a process known as “engraftment.” Engraftment usually occurs within about 2 to 4 weeks after transplantation. Doctors monitor it by checking blood counts on a frequent basis. Complete recovery of immune function takes much longer, however—up to 1 to 2 years for patients receiving allogeneic transplants. Doctors evaluate the results of various blood tests to confirm that new blood cells are being produced and that the cancer has not returned. Bone marrow aspiration (the removal of a small sample of bone marrow through a needle for examination under a microscope) can also help doctors determine how well the new marrow is working.

It's weird to think of Jim's immune system taking 1 to 2 years to recover. What does that mean? I have no idea. Now of course the biggest hurdle of all is the cancer returning. But we are not worrying about that either. We feel good that Jim has made it through this. It's the one goal that he wanted to make, and he has.

Anyway. Theres SCT 101. I just wanted to post a bit of info and how it personally relates to Jim, and to also let you know what is up.

I spoke to a women whose husband had a SCT the day before Christmas, and he's still in the hospital. We certainly don't feel this will be the case with Jim, but yuk.

God has been so very good to us. I have often thought about rough times in life, and when we think or feel that God doesn't care or isn't there. In those feelings and thoughts, I've often thought about how worse it could actually be without His loving hand guiding us through all of it, and I think it could really be worse, even though I don't feel it could, because I have been at wits end so often. When I look at what we have been through, yeah, it's been tou.gh. The hardest thing I've ever walked, for sure. But I truly believe that God has been very kind to me throughout.

Anyway it's late, and I'm not able to properly convey what I'm trying to say, so, I'm just going to shut up and check on my cyber pets.

Monday Part 2

Jim needs prayer. Long story short. The infection is not a real bad one, so that's not a big problem right now. But what is a problem is that they want to aspirate his toe to make sure it's gout, despite the Rheumy people saying it's gout, and Jim knows it's gout, and giving him Lasix can create Gout, and Jim's kidney numbers are up, which can hint towards gout. This aspiration is very very painful in and of itself, but when they are sticking you in a gout/inflamed foot...well.

In order to do this biopsy, they have to give him platelets because his blood is so jacked up and the risk of bleeding. And in order to give him platelets, they have to give him 3 benedryl because he has been having alergic reactions to them. They knock him out, and make him doopey. Not to mention the ativan, the dilauded, as well. And the worse thing about that is that his nephews Bob and Rege are coming to see him, and he didn't want to be doopy. I sure do hope they have a nice visit.

And I sure hope they don't inflict any more pain. Jim refused it initially, but then they refused to treat him for the gout,and he can barely stand. sigh.

MJ. I LOVED THE SHIRTS. GREAT COLORS. BEAUTIFUL. Thank you so much. I just got the package at my door as I was typing this. Thanks so much. I hope they fit. I gained a few... Oh, btw, we never got any notice about Jim's gift certificate so I will have to try and find out about that. Thank you very much for the beautiful birthday gift with such wonderful spring colors. Tell Joe thanks, too

Monday

Hi All:

Not sure if daily posts are needed. In 4 days that I have been gone, you have missed only things like, new ailments, sickness, people stealing my food, etc.

I still type in "Jim's jubilant journey" in the google box to find my own blog. (computer savvy, huh?) Every time I do, I see this.

Jim's Jubilant Journey. I named it this because even though Jim has cancer, we still have great joy, we are rejoicing, are exultant and will triumph....come ...

And yeah, that is still true, but it sure is cheesy. We have great joy, but that sounds bubbly, and our joy isn't. Our great joy is in our great eternal home, and the fact that we can serve God now during this time with our broken selves. Our "rejoicing" isn't in great loud praise, but rather in quiet thank yous that God is good and all of this is temporary. "Exultant?" I don't know what that was about. Triumph? We will, because the Holy Spirit is in us enabling us to. And ultimately at the end of life we triumph because Jesus Triumphed over the grave. So... I just wanted to add that because every time I see it it stares at me like some type of lie, and it isn't. It just was a bit...I guess less mature when I wrote that a year ago.

Okay, Now. Jim:

• Change of many meds, because they were wreaking havoc on his body.
• He's exhausted and only gets out of bed to go to the bathroom, and that may change cause:
• His gout is flared up, and we are very scared of this.
• He's on so many meds, it makes my head spin. The body can handle all these meds, and yet not destroy a simple cancer cell. hmmm.
• The worse thing is that Jim has an infection in his rectal surgery site. This was the one thing that the Docs did NOT want to see happen. As you can imagine, when you don't have an immune system, you can't fight off infection. Jim has been, I think, on 4 different antibiotics now. This is not good at all. But it is what it is, and I have no idea what will happen.

I don't have much more to tell you, since you know I have said that this battle is going to be long. When I mentioned Jim will feel better in 7 to 10 days, all I meant was he may be able to take a small walk. It's not zippidy doo dah, that's for sure.

Oh, and men from the men's group at North Park Church. Thank you so much for sending that card. It really really encouraged Jim, and that's what he needs most right now, as everything else is hard. You really live out what you say you believe, and we are humbled by it and we learn from it. (Now may God grant us an opportunity to put into practice what we have learned. ;) ) It's okay to wink at God, huh?

US

All done

Bag 2 is all done. The nurses actually brought Jim a birthday cake. It's something they do here after a SCT. I guess they consider it your new birthday because in some ways you're a new person. This will actually change not only Jim's immune system, but he will actually get Bob's blood type, too.

The cyclosporin that they give Jim continues to really really bother him. It makes his whole body feel like it's on fire, and it's making the neuropathy worse. They might consider tweaking it, but this is what keeps the GVHD risks smaller. But we don't have to worry about that for a while. Well, actually we don't have to worry about it at all. It's amazing what I don't worry about any more. Saying.."well we don't have to worry about that for a while" is almost a habit." My mom was a worrier. One of my fave family memories with my mom and sister is a few years before mom's death, the rain was making the hillside slide up the street from my mom and sister live, slide down onto the road, threatening other's houses. My sister's great debut on national television was her standing there with this dumb look on her face and she says. "When it rains, I worry." It sounded more like, "when it wains, I worwee." To this day when there is something bothersome, we'll just pop out with, "when it wains, I worwee." Kind of reminds me of "You're got mail" when Tom Hanks says, "we sell cheap books, so sue me."

Anyway, where was I going with this. Oh, Yeah. No worries, be happy kind of thing. I am doing better at this. I have been asking the Lord to constantly change my heart, my thoughts and my words that they be more pleasing to him. And worwee isn't a part of it.

Well, the docs say that it will take 7 to 10 days for Jim to start feeling strong. It's at that time that problems can start as well. And I think at day 14, they give Jim some more of Bob's cell that have been treated in something. It's called the booster shot.

So stay tuned. I'm sure there's more drama around the bend.

Thanks for all your prayers today and always. Jim is doing some leg lifts and squeezing his hand exerciser I got him. But he's really whipped.

Pray for Bob too, that his system rejuvinates quickly. He looked very tired when he left here and Jim is still worried about him. There's that word again. When it wains, I worwee.

Bob, you were gone so quick so you could beat the traffic. Thank you seems so little to offer, but we do thank you. And Carol, too. And we hope you being away from her back and forth hasn't been too hard on her and that her shoulder is healing nicely. You have been in my heart and my prayers and on my mind, Carol. We thank you, too.

Love Us

PS. Shelley, I got your text. I'll phone you tomorrow about your question.

Bag One Done. Bag two in a few hours

Well, here they are Bob's Cells Just sitting on an IV poll ready to drip into Jim. This bag is red, where the ones Bob gave today don't have any red blood cells mixed in with them. No particular reason as to why,

As you can see it was very painful for Jim.

Just Kidding. Baldauff's are warped, and this is an example of a great Baldauff joke. Really what you are seeing is the stem cells dripping into his IV, while Jim lays there eating the pecans that are laying on his BELDY.

Bob just stopped in and left. He looked very tired. He was on that machine most of all day. The cells that they extracted today will be brought up in a few hours and Jim will get the next transplant then.

I promise, no more "funny" pictures.

This was sooooooooooo anticlimatic. No drum rolls. No doctors in the room. I told John, it reminds me of when they deliver a heart for a heart transplant or a kidney. Some guy from a truck just carries it in a 6-pack cooler. Nothing ceremonious about it.

Now we sit and wait.

Day Zero----tentative 1:30

Today is the day!!!

Hi Everyone:

Sorry that I haven't been able to provide an hour of the transplant...SCRATCH THAT. IT'S TENTATIVE FOR 1:30 THIS AFTERNOON. Docs just came in. Jim' s feeling pretty bad from the Graft Versus Host Syndrome (GFHS) prevention meds. So here he is before stem cell. I woke him up and made him smile for you.

Here's brother Bob for those of you who don't know him. He came in yesterday for the stem cell donation, but they only got 1 million and they wanted more, so they had him come back today to give more stem cells. He has to keep warm, so they have him wrapped in bubble plastic with a blanket. He's smiling, so this is good. Jim is worried about his older brother and how this is affecting him, so I hope this pic makes Jim feel better. However, it is quite the trial for Bob as well. It's been a real sacrifice of love that Bob has given to Jim. But we know they all would have gone to bat for their baby brother to help save his life. The Baldauffs are an amazing family, and I have been thankful to God that he has made me a Baldauff since day one. Well, maybe after a few months. It was pretty overwhelming at first, there were so many of them. But all very special.

In this picture you can see the machine next to Bob that is taking the stem cells.

This is the machine that extracts the stem cells. It takes blood out of Bob's one hand, and then the blood goes through all kinds of tubing into this round tank that spins like a rinse cycle of a washing machine and that extracts the stem cells out, and then they go in one direction, and the it all goes through some more areas, and then the blood, minus the stem cells goe back into Bob through his other hand. That bag hanging there is some of the stem cells. That bag right there could be the thing that save my husband's life. Amazing. Because Bob is healthy, he will just create more stem cells.

Anyway, that's it. I'm getting off to pray...and eat a piece of chocolate.

time to pray

Hi there. Great idea, but I don't know what time it will be. I can tell you this. It won't be before 11.00 That much I do know how. If I find out what time, I will post it here and you can join me in prayer for Jim at that time.

Thanks for being so faithful in praying with and for us.

So far Jim has gotten 2 of the meds to fight the graft versus host disease. I have walked this floor many times over the past few months, and I have seen the feet and legs of some people who have this disease and it isn't pretty. Those meds, also, have made Jim very sick. He's sleeping right now and literally doesn't have the strength to get out of bed. I am here bedside taking care of my jumbo.

Bonnie, thanks for your encouragement. You have such a wonderful way with words. I remember reading your letter to Jim and him bawling his eyes out. We just love your heart. You ought to be a writer.

Oddly enough, as I am sifted as wheat, I feel that my faith in the Lord has gotten stronger despite my roller coaster of feelings. I continue to have very trying hours and days, and the feelings to go with it, but my faith is stronger. We both have felt alone as we have walked through this, not because many of you weren't there, but because it's only us two walking it with the Lord. He is the only one who knows and sees and understands and feels how bad it's been. And it has been hellacious. But I would do it over and over again. I love my dear husband. I'll tell you. Every night I swear I can't take another day, and the next morning, it's amazing that I'm ready to go again. I know it's a God thing.

Who knows what the Lord will use it for in the future, but I know we'll never be the same, come what may.

Well, my dear husband is up, and I'm going to tend to him. If I know the time, I'll post it here, as it will be easier than to e-mail you 4. Thanks. Great idea, sister.

Love US

Zero Minus One or something like that

They use rocket talk to count the days to the SCT and then other meds given. I'm not sure what day it is in rocket talk,but the SCT is given tomorrow. Bob came in last night and gives his donation today.

• Join me in prayer that Bob's blood is poluted with stem cells. Also the Chemo has whipped Jim in his butt. I mean, it is baaaaaaaaaaad. That walking around the floor has completely stopped. Getting up to go to the bathroom drains him. Also his incision and setons in his anas are starting to really hurt him. Docs came in late last night to assess the situation. It's a go for the SCT, and that's good, but we pray there is not an infection down there because this would NOT be good at all for Jim. Jim's still glad he's decided to give this a try, which is good, but his immune system and his blood numbers are so bad that if he didn't get this transplant he would die. And he feels like it. Turning in bed takes the wind out of him. It's amazing what a few days difference can mean. But we have been living this for a while. You would think we would get used to it, but we aren't. It just keeps getting harder, physically for both of us actually.

• Pray for me too. I have been having terrible eye fatgue and headaches. So I went to have any eye exam which is 50.00, until you get in there and need this test and that test and then it costs you 100.00. Turns out I need glasses. 3 pairs of them. I'm farsighted, so I need bifocals for driving and such, and then my midrange for computers is off, so I need glasses there, and I need reading glasses, too because my one eye is different than my other eye and drugstore reading glasses aren't different in each lenses, so the reading glasses that Iuse have been causing the eye strain...and blah blah blah...I just didn't need this in my life now, too.

Today I am going to my SCT class. I have been asking for info for months and all I got was a book on me being the care taker. The biggest part of that book, as I discussed with Karen, was a joke. It talks of how me, as a caretaker, needs my own caretaker cause the next 6 months to a year are going to be hard. LOL. That's almost too funny. Hello there. And what have the last 1.5 years been like? Even the lady who gave it to me laughed. Yeah the STC caretaking is hard, but it's not like Jim has come to this process in fine health. The book talked about how the chemo will make Jim sick and he could throw up....GET OUTTTTTTTTTTTT. nOOOOOOOOOOOOOOO.

So, I was walking through the nurse station, and their book was out on the counter,and I found out that they offer this class once every 2 months for people coming in for a SCT, and it happened to be today, so I am signed up. Surprise Surprise, but I am the only one signed up. Why? Well, first, there aren't that many SCT's,but mainly because they don't tell anybody about it. What a goofy place. Good health care, but the left hand does not know what the right hand is doing. If we ever get governmental health care, that is what it will be like...without the goodhealth care portion of it. They will also offer a close for "leaving the hopt. after a transplant, but that one won't be until March 27th, and well, we will already be gone, I hope. So, ummmm, that's dumb. But I'm happy for at least this class, and with it only being me, maybe I can get my "leaving" questions in with the "what's going to happen when" questions.

Well, you all have a fine day and pray for my Jimmy. Other than when he was at death's doorstep last Nov., I haven't seen him this down and sick and wornout. It's so weird when just days ago he was having a run around the tract contest.

Well, I have to get ready for my class.

Dropping Jim an e-mail

Well, it won't be long before Jim's stem cell transplant...4 t0 5 days. His neuropathy is pretty bad, so he can't type well, but he can read, and I thought I would post his e-mail address so that you could drop him an e-mail. He would really love to hear from any and all of you.

On the left side of the front page of the blog, I posted some of our contact information. I listed Jim's new e-mail address that he created for this purpose. Again, he may not be able to write back, but he will DEFINITELY be blessed to receive a note from you.

Thanks

Gloria

weird

It's another weird Valentine's Day. We didn't realize it was today until about 4 p.m. Then,

I said, "Hey, it's VD."
Jim: Yeah, it is. Happy VD.
Me: Same to you. I can't believe it. I bought you a card. It's at the lodge.
Jim: No big deal. You can give it to me tomorrow.
Me: Okay. Wanna do a crossword puzzle?
Jim: Okay

And that was the end of our Valentine's Day. And what's really cool, is neither of us care cause the perfect romantic day...the perfect "anything" just isn't part of our lives anymore.

Jim's in the WC, and as I sit here, I think to myself, wow, this is the best Jim may be for a long time...forever...for? Who knows. The chemo is starting to make him sick and tired. And then it's time for the Stem Cell. Then it's anybody's guess as to???? Had this been done at another time in this journey, we would have been filled with this great sadness for what this could mean. But now, it's just part of our day, like going to the store or the post office. So, it's kind of beautiful in a weird way, that the extreme fear is gone, and the holding on to nothing and trying to make it something isn't there either. We're just living each day where it's at, and while we're doing that, I've noticed that I'm not that afraid anymore.

Of course I could just be feeling today's feelings outloud, and this could all be subject to change in a week. But I reckon it's probably a bit of both. I'm more prepared for "come what may" through the letting go of things being a certain way.

:)

Hello Everyone:

Good comments to yesterday’s nightmare. Good stuff. Thanks all. The finger is bruised, but I think she will make it. Chocolate sure would have made the bruise easier to handle tho. :)

Bob came in today and gave his first bunch of stem cells. These cells that they extracted today will be treated and stored and given to Jim at day 14th after transplant. These are called booster cells to give the new immune system that extra boost. Bob comes in tomorrow again, for his first shot of neupogen to get those stem cells out of the bone marrow and into the blood. He will then go home with the same med to give himself shots every day and then will be back in MD next week for another extraction of stem cells. This extraction will be what they use for the initial stem cell transplant, as this batch will have the higher number of stem cells because of the shots. Jim’s transplant will probably be on the 19th. Don’t take that to the bank though.

In the meantime, Jim got a pic line in his arm for the one chemo. Once this chemo goes into a line, it contaminates it, and they can’t use it again, so they don’t use his port. So, poor Jim is all wired up. He also started his chemo today. This will last 4 days. I hope this will be the last chemo to ever go through his veins. Bob told us that while he was in the lab during his extraction, a man with cancer visited his donor, who was sitting next to Bob. Bob said that this was his 4th stem cell transplant. SHUT UP…

Well, that’s all I have to report today. It was a pretty good day, snafuwise. I'm glad I brought my bike. It was a good thing to do. I ride it back and forth from the Lodge to the hospital and it makes for a fast journey.

John thanks for the laptop. It’s wonderful to have in the privacy of my own room.

Nancy, I can see us two old farts knitting on the way up to Chicago. We can make the kids a toilet cozy. LOL.

K and Maddy, you are right. It did Jim good to take care of me. It’s what he lives to do. And it works for me.

Kelly, congratulations on your wedding. We are so sorry we can’t be there. You are going to be a beautiful bride. And I will certainly miss my brother in a tuxedo walking into church. I don’t know which of those 2 things amuses me most.

Sister, thanks for doing the mail.. I’ll e-mail you my address.

MJ, are you happy your Joe is home? I bet you are. I miss your words of encouragement, but I can hear them in my heart even when you aren't typing them. I bet you got a chuckle reading yesterday's post. I did. When it's all done and I look back, it's kind of funny (except for the chocolate thing). But I wouldn't want to do it over again. I walked past my stain in the carpet from the fruit juice and stuck my tongue out at it.

HAPPY VALENTINES DAY.

Oh, and please...whatever you do...DO NOT FEEL SORRY FOR ME AND MAIL ME CHOCOLATE....If it's too late and you already did, I'll forgive you. ;) But if you're thinking of it, DON'T....Send an exercise ball. LOL.

Love to you

Sorry Lord, but I hated today

First things first. Jim signed onto the protocol today. Not until 6:15 P.M., but he's signed on.

And all of this junk leads to that.

I got up slowly today. I had to wait for the furnace repair guy to come. I had to go food shopping, so off I went. I came back carried the food into the lodge and made tuna sandwiches for me and Jim. I also made soup. Jim loves Aldi’s tropical fruit, so I opened a can of that and brought it to him as well. I had to take the CD player and Cd’s to his room, so I loaded up the van and off I went. I loaded up the small dolly I had and went to the 3rd floor.

I noticed the soup was leaking out of the bag and there was actually a pool of soup in the bag, wetting the paper plates, sandwiches and peaches, was dripping on the dolly, etc., so I took it out of the bag, and started to carry it, and put the rest of the stuff on the dolly. As I’m in the 3rd floor atrium, the fruit falls off the dolly and opens up and goes all over the floor. The juice sprayed up and wet the back of my jeans and drenched my coat. I never saw where the peaches rolled to. I had to clean that up, and I get to Jim’s room, and I’m crying like a baby, feeling like I failed to take good care of Jim again. Jim saves what’s left of the lunch and does my laundry, while I put on his sweat clothes. I finally stop crying. And we’re wondering where the SCT team is to sign Jim on.

Every year we have been married, Jim has bought me a valentine day heart filled with candy. Steedles, Yetters, some place good. I’m not a romantic person at all and all I could think of, the first few years was, “Hon, you could have got 2 pounds for the price of 1, sans the heart. But it started to grow on me, and I saw the love and romance in the man who did something so special, something no one had done before him, and that was to give me beauty and to touch my heart. So a few weeks ago, I thanked him for all the years of hearts, telling him how much I grew to love that frivolous display of love. I knew I wouldn’t be getting candy this year with us being here and Jim being sick.

Because of my mess with lunch, Jim surprised me with a beautiful pink satin heart with Esther’s Candy in it. Oh my goodness is it good. I felt so guilty and blessed. First Jim used a gift card that Joe and MJ bought for him for Christmas, and with 2 family members helping us financially, I felt guilty for that. But it does something to my heart now, and to Jim’s to buy this. It makes me feel lovely and loved. And I just LOVE to open that box and look at it, and then taste the wonderful chocolate in it. As I eat it, it feels like I’m feasting on Jim’s love for me. And he always buys me chocolate covered cherries, coconut, raisin and peanut clusters. None of those creams and such for me. And I savour each one, and everytime I open the heart up it speaks of that love.

Well I had 2 pieces and the STC team FINALLY came in. We went over everything and signed everything. And it was a relief and it was scary. I needed another piece of chocolate after all of that. And …everything fell off the chair, and my beautiful pink heart box of chocolate opened up and spilled all over the dirty hospital floor. Well, I screamed out and cried and cried for hours. I’m still crying. After the lunch fiasco and STC signing and now this, I just broke down. And heck, let’s add Johnny and Leah moving to Chicago to go to school to the list, too, as I will miss them and know I won’t see them much, as she will be a prisoner to school for 2 years, and then working, and…(don't feel bad kids. I don't say that as a guilt manipulative thing. You know I love you, support your decision and want what is best for you and what you want. I will just miss you is all.)...I digress. Anyway. Jim had to clean up for me and throw all my candy away, because I was inconsolable. Throwing that candy away was like throwing Jim’s love away, like throwing him away. And when I think of all the energy it took for him to order it, and the trouble with UPS, and the cost, etc. It just breaks my heart. So, Jim took care of me again.

Well, Jim is getting chemo tomorrow and so I thought I would disinfect his room, and to make this horrible day end faster. After all I am the care taker. I better get at it. I ended up slamming my finger in between a sharp door and iron on the chair pusher. I screamed it hurt so badly, and I started crying all over again. I had never felt such pain. I cried and cried and cried. And Jim got me ice and I lay down on his bed and he put ice on my finger and rubbed my head for an hour while I cried some more.

The good news is I didn’t swear. I tend to swear when I hurt myself rather than cry. Usually I swear on the inside, occasionally on the outside. Jim handles the tears better than the swears.

Anyway, I finally made it home. And pecked this out trying not to use my index finger. To add insult to injury. When I hit “post” to post this story, the internet browser asked me to sign on, despite me being signed on, and I lost everything that I wrote, which as you know by now, is quite a lot. And I did this trying not to use my swollen finger.

So, I really hated this day. I’m sorry, Lord, but I did. I’m so very tired, Lord. And I’m supposed to be Jim’s care taker, and look; he took care of me today, despite my attempts. “Caretaker” is an assigned role that everyone going through a STC needs. If you don’t have someone who is willing to do this, you can’t even get a SCT, it’s that chaotic. I really need your strength, Lord. I really need to feel your love through your people, Lord. Keep the mean nurses away. Have your people pray for me. Keep the enemy at bay, Lord. But I do want to thank you for such a wonderful husband, Lord. And please heal him and keep him with me. Apparently I need him more than he needs me.

Well, hopefully tomorrow will be better.

Pray for Jim. He has to get a pick line for the one drug they are giving him and they hurt. And pray for Bob, too. He has to show up early tomorrow for blood draws and they will start him on his meds to increase the stem cells. He will have to go home for a week and give himself shots every day and then he has to come back and they start the stem cell extraction. So, pray that he produces a lot of stem cells, but that the shots of meds don't cause the terrible bone pain that it caused Jim.

Months ago, I read some of the best thing I ever read on John's blog, "wait and hope" written by his friend Mike. It said.

1. God is good.
2. Life is hard.

It's because I believe #1 that I can survive #2

AMEN...

Okay that's all folks...if you're still with me after that long pathetic saga.

More Delays

Well, no news yet, and he's still not signed on. Jim's really nervous and irritable. He says if he dies during or after it, oh well. But he at least wants to get to it. Bobs blood tests aren't back yet. If they do the SCT (which we believe they will) they told us it will be delayed until the 19th now because of these delays. Hurry up people...

That's all I can report. Well, this too. They have a sign up sheet on the wall where people can walk laps of the unit. 2 laps get you 1 x. So, Jim has a bunch of x's. But every time he goes out, this other guy is 3 or 4 ahead. You really don't win anything, but it sure is making Jim walk, and without even realizing it, he's walking further than I have seen him walk probably since the summer. And he's faster, too.

Anyway...Oh, that and we saw a copy of the protocol that he will have to sign...IF THEY EVER GET HIM ON...It's scary.

K,time for bed

I'm here

Well, I made it. And I'm all unpacked.

My birthday was pretty uneventful. I woke up, played a game with B & S's kids, packed up and went to the lodge. The room was ready, so I unloaded and went to the hosptial to see my Jimmy. He looked good. I had brought some cake from home, so we had a piece of pineapple unpside down cake together.

Bob came into the NIH yesterday where he underwent many tests, and they took about a gallon of blood. They are running one more test, and until that comes back, they still won't sign Jim onto the protocol. I don't think there could be a problem, but one never knows down here.

I unpacked late last night...oh, I have to go. John lent me a laptop, but the CD rom isn't working and I wanted to start the taxes. So Jim is going to take apart the computer in his room and try to remove the CD rom drive from the US government so we can borrow it. He's a piece of work. Brother Bob and Jim are very similar. Bob was here one day and already has many solutions to their governmental snafus. These Baldauffs are fun. But taking apart the govt.'s computers? Come on Jumbo. Be good.

Hey, John....Dad wants to know why you have your computer partitioned and such all fancy, and yet you have him fix your computers? Is the CD rom broke in your computer?

K, gotta run. Jim's ready to "borrow."

Does this crap happen to everyone?

I'm sure it does. But it seems like I'm a target. I try saying that without the victim mentality. So here's what happened this morn. as I prepare to move to Bethesda for 3 to 6 months.

For the first time in weeks, I fell asleep at a normal time 11:30ish. But alas, I woke up to flashing lights in the BR, from the DR. It's 5:00 a.m, and I get up and it looks like a road crew. So I layed around for 15 mins and got up to shower. I had no sooner lathered up my scrunchie thingie with Neutrogena bath wash and coated myself with the soap, when the water shut off. I couldn't believe it. Me, Mrs. Dry Skin. So, I had to rinse off with diaper wipes. It took almost a whole pack. And I was freezing. I'm not really rinsed off either. And so I went down stairs for the 1 bottle of water that I have and brushed my teeth with freezing water. Glad I use Sensodyne. So, that was today's excellent adventure. I'm actually laughing at this more than angry, but there is an air of unbelievability about our lives anymore.

Anyway, that's my Pittsburgh sendoff. I only have a few things to do before I take off, but I'm on my way.

Today is Jim's bone marrow biopsy and tomorrow he signs onto the protocol, and it is official. Pray that the BMP isn't very painful for him.

Yesterday when I was packing for my move, I found a ticket stub to the Aviary from September of 2008. Jim and I went. He walked the whole Aviary, slowly. He was in pain, but stronger then. We went under the thought that this would be our last outing together, as Jim was released to go home to die at that point. We were told that the radiation could hold it off for a while, but I think that was more hopeful wishing on the doctor's part. The increased pain told Jim that was not happening. Anyway, it was weird to see that stub, and to think of all that has come to pass since that time. I have had 5 more months of life with my Jumbo. That still amazes me. And while it wasn't quality life, we are so thankful for it, and more so for the opportunity to receive care that can possibily give us that quality of life, the desire of which we have seen reflected in each others eyes for a year now. But amazingly, humans really are adaptable. I am excited as all getout to go sit in my hub's hopt. room, plop in my chair, put my feet on his bed, with nothing to say to each other (I mean, what could we possibly have to talk about after 200 plus days of this past year being spent in a hospital room) and do a crossword puzzle. This has now become our new "quality life." And I've said I would do it forever if I had to. BUT....BUT....

This small stupid crap like diaper wipe shower rinses has GOT TO STOP....

Adios amigos.

ADDENDUM...ADDED AT 8:21. My water is and I rerinsed and am eating humble pie. My friend Maddy lost her whole well. Maddy, I would come and help if I wasn't leaving. God Bless you my friend.

Saturday's update

Hi Everyone:

Well, I'm doing well. Now I only have 5407825 things to do, so it's winding down.

I'm very excited to get back and see my Jumbo. This is the longest I have been separated from him in wayyyy to long and I miss him terribly.

Today, I actually found myself having about 3 thoughts that pertained to Jim and I and our future. And it was scary as H E double hockey sticks, and as exciting as our first kiss. Weird.

Jim's blood is still odd, but docs say it's where it should be. His kidney numbers are up and his ...what's it called uric acid, I think. That's up, too. Probably cause I'm not down there saying. "Drink. Drink. DRINK. DRINK.


I won't be there for the bone marrow biopsy, and I am sad/glad. It's the one thing I have not been able to learn to stomach. And I've learned alot lately. But I will be down there for my birthday, so that's fun.

Johnny and Leah got me an awesome goosedown vest, which is perfect for the climate down there. My sister and Mark spoiled me, too. I remember last year when Judy called everyone and told them to love on me for my birthday. I still carry that memory from last year and all the love you gave to me, and I just thank you again, and it was done so well, you all are off the hook for this year.

I will not get my lemon meringue pie that my Jumbo makes me. :( But he promises to make me one when he get home. He's thinking "future" too. Is it scary for you Hon?

It's kind of weird. Last year at this time was when we found out that Jim had cancer. He was getting his first round of chemo a year ago today. He came home on my birthday. This year, he will be getting his first round of chemo (and hopefully his last) as the prep for the SCT. Kind of weird, huh?

Well, I'm going to go finish doing my stuff. Hope you all are enjoying this WONDERFULLY warm weather. I know I can't wait to get back down there, not only to see Jim, but because it's a bit warmer down there, too. I'm bringing my bike, and I'm pumped. (pun intended) I want to cook some while I am at the lodge because Jim just isn't eating well with the yucky hopt. food, same stuff over and over. Years ago Jim put a basket on my bike for me. And everyone laughs cause I have a basket, but when I fill it with goodies from the Lodge and ride up to the hopt. with a basket full of goodies, won't my basket have redeemed itself....

Good news again...

Wow, but I could get used to this good news stuff.

Jim talked to the docs. They are going to keep Jim in the hospital as long as they can after the transplant to make sure that he is good and healthy. They said we could also stay at Bob and Shelley's, BUT...we may have to stay at a hotel close by for the first few weeks for safety reasons. I can do this. So, this is good. Ruthie and Maddy, you both were so right. I'm very glad you were.

Also, they moved Jim into a private room on the Stem Cell Transplant side of the hospital, and he's with his new team now. This will help to keep him safe from germs until transplant. His bone marrow biopsy is on Monday, and they start the prep chemo on Tuesday. His transplant is as scheduled, February 18th. Bob the donor (cousin of Bob the Builder...lol) comes in on Monday to start receiving his meds to increase his stem cells.

Pray that Jim's bone marrow biopsy isn't as painful as the others were. Pray that the neupogin that Bob will be getting doesn't make his bones too sore. And pray for protection for Jim from any infections. That is the only thing standing in the way right now of the SCT. Also pray that he can calm down. He's so close he can taste it and he's fretting and worrying that something is going to happen to him and is going to come in and steal this from him. I hope that you can understand our fears and struggles right now. It's not a lack of faith thing. It's a multitude of strife thing. We don't believe that faith is something that is quantitative, in that if you have lots of it, you can then use it as a tool to purchase miracles or good outcomes. We believe that it's Faith in God...period. I think the struggle for us is the "resting" in whatever outcomes there are, knowing that God will not abandon us.

Ruthie, if you still want to come over tomorrow to help, that will be good. I'll call you. And Bruce, I'm sorry I didn't call you today. Johnny came in to help me, and I was up since 3 a.m with bathroom problems, so I couldn't find a time to meet with you. I have written down a few ideas where I could use some help and will call you by tomorrow. Jim wants me to thank you for calling me and looking out for his bride, as well as being faithful to both of us as our brothers and sisters in Christ. You guys (our church) have been such a demonstration to us of what it means to live out what it is we say we believe.

Okay, still got 4378503897518653 things to do.

hmmm. I'm kind of puzzled. It's really a weird feeling to see things going in the right direction for Jim.

Busy

Sorry that contact with you is scarce. I'm just so busy and emotionally and physically drained. Seems all I have been doing today is crying and trying to deal with the latest snafu as they arise. Today's wonderful news is that Jim's meeting with the social worker didn't go well, as she doesn't think the doctors are going to approve us staying with Bob and Shelley's because it's too far. So, I've been doing nothing but crying or staring into space all day. Pathetic. This morning, I was crying because I was a horrible mother to my dog Ruby who died...what, 3 years now? Get the basket. I'm going nuts.

And then, Until 15 minutes ago when I discovered that my husband was spending a few hours in a filthy family room because his new roommate has pneumonia with a fever and is coughing his head off, so Jim left and called the doc, and they agree that it's nuts, and so now they have to move that guy and...

It just never never ends. And the other day I swear I heard the Lord tell me it's going to get worse. I know that Jim has a long row to hoe and needs me. I just don't know how to find me anymore.

Loved Rubbing it in

Yeah, so we hung this on the window to rub it in. Couldn't miss it. Tee hee hee. Although, I hated leaving my Jumbo there all by himself.

And this is Jim's favorite salt water fish. It's a puffer fish. He has an overbite and can't close his mouth. So, it's like he's smiling at you. Upclose, he actually has buck teeth.

It's Official!!!

Hi Everyone:

Yeah, I concur with your remarks. We got the word yesterday that it's official. We heard "complete remission." It's mind boggling.

This is wonderful for the SCT. It makes it so much more possible, in the medical realm, that this SCT can give Jim more life, and possibly lots of it. I can't go into it now because I'm busy as heck. Why? WHY?

I'll tell you why. Here's how we celebrated the news.

G: "Oh, hon, isn't this wonderful."
J: "Sure is."
G: "We said, it would be so amazing to hear those words, even once."
J: "Sure did."

By now, you know that Jim is a man of many words. LOL. Anyway, we ended that long discussion with:

G: "Well, it was fun celebrating, I better go pack."
J: "You sure."....

We heard the official news at 4:30. Jim's doc appt. was over at 5:00, and I was on the road heading home at 5:30. So, I'm here now to pack to move away for 3 - 4 - 5 - 6 months. Who knows. (Jim's good results could mean less time rather than more)

Anyway, it continues to be a whirlwind. I thank God for giving me stamina. I'm glad, MJ, that's he made me an "ants in the pants" type of gal. But I could use some prayers, cause really I just wanted to lay in bed all day. I''m tellin' ya. The ol' gray mare just ain't what she used to be.

But I can't lay in bed, and I can't sit here gabbing either. I have everything to do from getting into the summer clothes, to filing an extention for our taxes to visiting my dad, to banking, to trying to figure out what to do with our mail, etc.

Then there are things I don't even know what to do. Should I pack up my computer? Should I bring the meat from our freezer down to B & S's? Should I? What about the greenhouse plants? Do I just throw them away or do I ask people to pick a day and help with watering. HELP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Seriously. I would love an input if while praying you have some great ideas, or just, perhaps you've done something like this. Like Amy...you do this in a shorter way and in a different way, but maybe there is something that you ALWAYS bring...that kind of stuff. Maybe some of you go to Florida for the winter and couldn't live without.....oh please...let me guess...you're bathing suit... ;)

K peoples, gotta go.

WARNING WARNING WARNING:
BELOW IS FOR JIM'S EYES ONLY. If you cheat and read it anyway, I won't be held responsible for your nausea.

Hi Honey bunch: It's morning, and I miss you and I love you, and it was told in bed witout to. I think you are at one of your many appts for today and I'm sorry that I can't be there wheeling you around. Here's a kiss and a hug for you. XXXXXXXXXXOOOOOOOOOOO. I wuv ew.

Wow

Well I got all kinds of things to talk about. First and foremost, the PT scan.

It hasn't been officially read by a radiologist, but Jim's team of oncologists read it, and according to the PETscan, Jim's in REMISSION, with no sign of cancer. Now, every thing changes here, so we shall see. And this doesn't mean that Jim is cured and doesn't have to have the stem cell transplant. (doesn't mean he isn't either, though...) But this is very good for the STC working better. Also, we have to wait until the 18th before we start and Jim's cancer is soooo aggressive, as you all know by now, so we're glad nothing is lighting up. Again, we have to take this with a grain of salt.

So, after 19 months of Jim fighting this cancer, this feels good for today. I said to Jim not too long ago. "Wouldn't it be something if the PET scan showed the cancer was gone. I would just relax and rest for a day knowing that your distorted DNA isn't trying to kill you. Who knows, maybe God healed him. Or not. Either way we have to have the SCT cause with Jim not getting chemo right now, it could trying to grow. But isn't that cool. It's very cool to think that. And it's good news for the SCT. What's not cool is that had we come here before CHOP, they would have done EPOCH, and Jim may have gone into remission and stayed there for life. Woulda coulda shoulda...not gonna. It is what it is. And for today, "no cancer" is fun to think of.

Today Jim started to procedure to put onto the SCT team. He's having all kinds of tests done, meeting with the social worker, the nutritionist, etc. This will take all week. My plans of coming home might have to change....again....because Jim's next chemo before the STC is marked on his itinerary as an outpatient, and with this seton stuff and his issues, he's upset now and we have to figure this one out.

Jim also has thrush from all the antibiotics he's been on and it's going down his esophogus, so we have to work on this one, too.,

I'm supposed to go to the Lodge on the 5th and then leave the 8th and go back the 10th. I think I'm going to tell them not to the Lodge until Jim's stem cell. I hurt my back lifting my luggage, back and forth, back and forth, and I'm just tired of all this changing all the time. I literally have been living out of a suitcase for almost 4 months now. Jim, too. Despite being home twice in that time, it was short, and filled with things to do and Jim going to the hospital. So, my plans are still up in the air. But I am going to Bob and Shelley's tonight.

Well, Jim's a bit upset about a bunch of things right now, so I have to go and ease his mind.

Talk to you later
Love Us

I don't get it

I just don't get it. The groundhog has seen his shadow every year since 1999. How is it that this groundhog can live nextdoor to Pittsburgh and see his shadow? Anybody who lives here knows that we don't see the sun all winter. What ????Does it come out for one day? Geeze.

Things are deteriorating down here again. Jim booked me for another night at the hotel. But instead of it giving me the Hilton again, Priceline gave me the Hyatt Regency in Bethesday, so I have to check out to recheck in, and check out again tomorrow. Meanwhile, Jim has a room mate with issues, and sitting in that cubbyhole is driving me nuts. I am exhausted folks. I can no longer keep up this pace. I have to set some serious boundaries and this is very hard.

I was thinking of coming home to pack today for our 3 to 6 month move down here, but the doctors aren't sure now that we are even going to make it to SCT. Jim's immune system is shot, which is good, but his platelets aren't coming up, which is bad. and blah blah blah blah blah. WaaaaaaaaWaaaaaaaaaWaaaaaaaaaa.

:-P~~~~~~~~~~~~~~~~

Gosh, but I'm sick of this. Anybody want to go for a magic carpet ride? Firt's it's Bill, and then it's Bob, and then maybe it's no one. First it's this and then it's that. Meanwhile, Jim isn't on any particular protocol, so he doesn't really have any one calling the shots. They keep going back and forth. But he is getting PET scan today. Stay tuned....

So, I have no idea, once again, what is going on. I think I may skip the Hyatt altogether and chock that up as a money loss and just go to Bob and Shelley's and camp out for a few days. Jim's not sick, just...well, stringy. And I have this strange rash on my chest. My dry skin is itchy and I scratched and probably caught some type hospital staph germ or something. I'm sick of hospitals, sleeping in strange beds, showering in strange showers. The hospitals are filthy. Ewww. So, I think I'm just going to go home...to B & S's. Unless the Hyatt gives free breakfast. I could use a good breakfast.

Last night I went to bed positively drained, today I woke up recharged. But my full charge doesn't feel like my old full charge. I need His strength to continue this pace.

Thanks for your prayers people.

Love Gloria

Updates

Hi everyone:

Sorry, I didn't update yesterday. I hope I didn't have you worrying. I just took the day off.

The last CT scan that Jim had a few weeks ago mentioned that the cancer was probably at about 3 cm. A normal lymph node is 1 cm. This CT scan shows that they are still at 3 cm. The doctors seem encouraged by that. Jim and I are a bit less encouraged. But we are not discouraged. The doctors say that that could mean it's stable. It could also mean that the cancer is all the way gone, and that those 2 cm's are scar tissue from all the swelling, radiation, etc. We don't know. We know more how this cancer has behaved. Either way, it's not a deal breaker for the SCT. But if it's active, it will certainly grow before the 18th of February, the tentative date for the SCT. And I don't know what will happen then. Jim is having a PETScan tomorrow. This will light up the cancer and will truly show whether there is activity or not.

Again, Jim and I continue to do well with all the info that we are given. Certainly, it's a bit harder to process the "bad" news versus the "good" news, but all in all, I think we are doing very well resting in the Lord, or sending things back up to him, via the conveyor belt.

The SCT Team that we have sent their nurse/coordinator to speak to us. Once again, the news is different than everything we have heard so far. She gave us a book about SCT's that I read, and it says that often time info isn't presented properly because there are all types of different statistics. You would have to read the book. But the bottom line is that the Coordinator told us something that goes in the opposite direction of what we were told all prior. So, here's the scoop as of today. Take it with a grain of salt.

Innitially we were told that 50 percent of the people die from the transplant itself. Yesterday we were told that the transplant procedure itself is pretty innoculous. The 50 percent that die usually die from infection or the cancer itself. So, this was good news because we envisioned these stem cells going into Jim's vein, and something going haywire, and him flatlining. That does NOT happen. We then thought that the possibility of infection and the cancer itself, only added to the 50 percent death odds. So.....Now we are hoping that that is the bottom line. We are pretty sure it is, particularly since Jim is getting a mini-transplant, which means that Jim won't get the lethal doses of chemo and 2 days of total body irradiation prior to SCT.

Also, 4 days ago, we were told that 1 person with Jim's type of cancer had remission with STC and more chemo. She's not considered cured yet, because you have to go to the 5 year mark, but her cancer is in remission. I'm not sure how long of a remission she has. Anyway, we were NOT excited by this. 1. One. Uno? Yikes. But the Coordinator yesterday told us that they probably only have treated maybe 3 with Jim's cancer. So... that's a third. Again, we aren't looking to %'s really. The reason there aren't that many with Jim's cancer treated with STC is because they have all been cured by their 1st chemo, so we just keep on keeping on, but it's a bit less scary than it sounded. Also, she said that they have treated other types of "aggressive cancers" with STC and have had more favorable responses. She didn't say it excitedly or with #'s and %'s. We know the chances for complete success are on the low end. Maybe 20 percent or something, but when you hear "one" it sounds like 1 percent. And despite us not going with percentages, it's hard to overcome thinking 1 percent is all that made it.

Anyway, I ramble and I'm sorry. I told Jim that I was going to Bob and Shelley's today, and know what he did guys? He pricelined the hotel again. He said I am not driving that far tonight after the Steeler game. That makes sense, but this does need to be the last night, as expenses are on the rise.

I have to make a list of things to do. I have to leave Jim, go home, pack for us to live down here, buy a bed for Bob and Shelley's, do something about my mail, banking, plants in the greenhouse, etc. I think once Jim's bottom is doing a bit better, and he enters into all the tests and such for the transplant, that's when I will come home. Although, I would like to do it before the room opens up at the lodge, so I don't lose it again. So pray for me that I make the best decisions in this regard. Thanks.

Talk to you soon.

Love Us

ps. GO STEELERS.