A lady called from NIH this morning, and said the soonest they can see Todd is next Wednesday, and this was "prioritized." They want us there early Wed morning, and she said it would be a long day. He'll actually be admitted in the morning, and then we'll spend the day there, going over all the slides, tests, and scans and talking with the drs in the afternoon, after another physical exam, to determine how to proceed. She said it looks like they will schedule surgery asap to remove his kidney, then treat the metassi...(sp?) in his lung after recovery.
The lady suggested we come down Tuesday afternoon and stay in a hotel, because she said Wed will be a long day for Todd. That's fine, but what do I do with Toby? Mom could never handle her at night....I can barely handle her! ugh. I know it will probably be too much to travel early in the morning then spend the day there and drive home. Todd is too weak to do that. I'll have to keep praying, and maybe Toby will be feeling better and sleeping better by then.
Sometimes I just want to cry, Betty. It feels so overwhelming. We just come off of yesterday's "high" with good news, and now I feel like the weight of the world is back on me. Todd's back to feeling terrible, said he had a bad night (I wouldn't know, since I spent the night in the living room with Toby), and he's in a lot of pain. Oh, I need to call about his pain med, too, don't I? I give up. How can I do all this???? I know, one step at a time. One hour at a time...
Jan 17, 2010
Posted by Wendy at 10:56 PM
Jan 4, 2010
December 27, 2004
December 28, 2004
December 30, 2004
December 31, 2004
January 1, 2005
January 2, 2005
January 3, 2005
January 4, 2005
I don't understand this at all. Here's a guy who goes off to work every day, healthy and strong, and now all the sudden even a little walk in the hospital wears him out. He's so weak, and I hate seeing him looking so sick. It just seems like things keep getting worse. My heart is breaking, Betty. I hate this and am dreading tomorrow. This is so unreal. Tell me it's going to be ok again, please? ...So tomorrow is our big day. He goes in at 7 am and the procedure for the biopsy is at 8 am.
December 28, 2004
He's resting now at the hospital. I'm going back in a few minutes to sit with him. He needs to wait for a chest X-ray around 2 pm, to see if, ah, this is tricky, so bear with me, to see if the fluid between the sacs in his lung has drained?? or something like that, because when they took the biopsy, his blood didn't clot as expected, so they are monitoring him, and said the holes should close on their own, but if not by 2 pm, then he has to be admitted with a breathing tube over night. This is unlikely, they tell me. So I've been telling everyone I have to go back to get Daddy this afternoon, praying this is NOT the scenario here. He looks good, but this morning he was in a lot of pain again, unsure whether to take something. They gave him something when he got there. They gave him more after I saw him around 10. When I left he was almost asleep, and I told him I'd be right back. He didn't look as yellow, but his fingers looked that way to me. The nurses said it was "fine." Better get back up there.
...Well, he gave us a little scare, but that "hole" healed nicely and everything looked good on the 2 pm X-ray. yay! The dr came out and talked with us, and he said the results will be back in 2-3 days, and to make an app't Thurs with Dr. Gary to go over everything (which I did). He said the preliminary results will be back today, but the more extensive lab work (where it came from, what "type", etc...) will take another day or two. I'm kinda glad we didn't hear anything today, but this waiting game is getting on my nerves.
...I am so tired and even emotionally tired right now. I'm not answering the phone anymore....I just don't want to talk about it anymore to anyone. It's too awful to even think about. I did tell the boys today. It was just them, and I tried to explain that it's going to be a long road ahead of us, and that we will find out more tomorrow. They were good. Not many questions, but a few, and of course one being is daddy going to die? :( I told them no, but the treatment for this may make it seem that way, at times. I told them he could die if this was left untreated, but that the drs were doing everything they could to prevent that. I think they understand. (I told them he has a tumor on his kidney and some little ones in his lung and that the drs are pretty sure it is cancerous, but we'll find out tomorrow absolutely for sure) Yesterday without the kids when it was just the two of us, Todd said he felt the worst everytime he looked at Toby, and was crying again at the hospital while waiting for the repeat Xray. He's losing his optimistic outlook. :( I guess it's hard to stay optimistic when all we continue to receive is bad news. I have a feeling that is only going to continue tomorrow.
Today is hard, and I don't know why. Todd wanted to walk around the mall, but he was so weak and we did so many little stops, and now he's really hurting and told me the pills aren't working like they used to. I really hate this. I don't know what to do, but told him we need to tell the dr that tomorrow when we see him. I hate this.
December 30, 2004
The last few mornings I wake up and dread facing another day of this. I just don't want to go through it or deal with it anymore, yet I feel like I'm being pushed through the days by some unseen force. It's hard to describe, but I want to stop and watch for just a minute, but am unable to do so. It's so draining, and I can't stop it, even for a second!
December 31, 2004
This afternoon I had to get some errands done, and Todd practically begged me to come along. He said he needed the fresh air (it's in the 50's today). So, against my better judgement, I let him come. He was in so much pain and so tired, only after an hour of running around, that I brought him home (telling him I was finished, but I have more to do!). He went right to bed, but took 2 of his pain pills. It took awhile, but he finally felt better. How do I avoid this?? ugh. When he tells me he is ok and wants to do something, I figure that is good for him. But I can't tell when he's really "ok" or not. I just don't want him in the hospital before he has to go in, ya know? I want him here as much as I can keep him here, even though it's nerve-racking! There's such a solemn fog over this place, but the younger ones, especially Toby and Winter, help keep smiles coming despite it all.
We got pizza tonight for dinner, and we are planning to play games and the girls and I baked cookies. I love when Todd comes in and eats the batter and as many warm cookies as he can get his hands on...it makes the baking worthwhile when the kids and him eat them so quickly! Tonight Todd said the smell made him sick, and he didn't eat any. :( He said his stomach was upset; he did eat a little dinner. :( It breaks my heart, I hate this so much.
I have to get back to our scheduled game and fun night, even though I don't feel very "fun" tonight. Todd's in bed (as usual). :(
January 1, 2005
Todd got up and took a pain pill right away, then started taking down the Christmas decorations (we traditionally do this on New Year's Day, but I didn't think he'd do it today). He started at 7:30 and as the kids were barely waking up, he kept telling them what needed to be done, and kept saying he was running out of time (meaning his pain med, but it made the mood tense and everyone was quielty doing what they could). It was not a good way to start the day, but I understand why he was pushing everyone so hard, but still. Once the tree was out (Abe and Nathan did that), Todd said he had to go lay down and take more pain medication. He's been in bed since. But our house is back to normal, almost.
The rest of the day should be relaxing. I'll fix him a good dinner later, and hopefully everything will be ok until next week when we find out when and where to schedule this surgery. I wish he would just take it easy, though, until then! I just want that junk out of his body asap!!!! I want him better!
January 2, 2005
Both Toby and Todd are up tonight. :( Todd had stopped bleeding yesterday, but is bleeding again now. He's been in pain all day and tonight again, always either telling me he's waiting for the pills to work or waiting until he can take the next dose. Yesterday, after all that work in the morning, he did sleep for several hours, but tonight I haven't heard any snoring. How long do I let this go before calling? I hate to leave him tomorrow when we go to church, maybe I'll just go for the one hour that I'm needed to teach.
I didn't think I wanted to know, but now I think I do. What is really going on? Why is he bleeding so much lately? When we asked the dr about this before, the dr just gave some vague answer about the tumor breaking down the kidney and causing it to bleed. Then he said he needed to know if this happens again, and how that was a warning sign. Warning of what? Also, Todd was telling Pastor today that they said he would have chemo after the surgery, and my mom said or was it radiation and Todd said, no, chemo becuause it is in his blood. I heard the dr say last Wed that it could possibly be lymph something leukemia. But then the dr said his blood work looked ok this past week. Does he have leukemia? I guess I want to know if Todd is going to make it. Will he get better? Do we have a chance here, or is it not good at all? Should I call you later tonight to ask this? Or is it easier just to type it to me? I think I know what the answers are. It seems so gloomy around here, despite Toby's antics and Winter's funny expressions. I just want to know what to expect these next few days, even before we hear back from the dr about the final results from the biopsy.
I'm doing well in front of the children, though. We're really trying to stay focused on good, fun, cheery conversations. My Mom is helping with that, too. But inside I want to scream out all these questions to everyone! What is happening and what is going to happen, Betty?
January 3, 2005
I appreciate your phone call even more after reading your precious, albeit difficult, email while holding Toby alone in the middle of the night. It's ok. I kinda knew the answers. He's definitely not doing well. The "warning signs" are prevalent and very scary. We'll call tomorrow, and I'll try to keep you updated as soon and as best as I am able.
...Sue was here all day today and was a great source of help, comfort, and encouragement. Todd was feeling good, so he stayed up and talked until lunch with us, and I wasn't able to talk with her privately during that time. Todd talked optimistically, and kept saying the oncologist told him it wasn't fatal and that he has two kidneys... Sue kept shaking her head in agreement and was very supportive to him. Then Todd said "We just don't know anything yet and they aren't telling us anything." I thought that was strange, but kept very quiet and let him talk to Sue. She assured him they weren't telling us anything because they didn't know anything yet, either. After he ate a pretty decent lunch, he went to bed and Sue said she could tell he was holding back and was very scared. :( I told her everything I know to this point, and told her about your email last night. She asked if I would mind her reading it, so I printed it out, and she read it. She was crying, and when I asked what she thought, she said, "I'm liking this lady more and more, Wendy." She said she totally agreed with everything you wrote, and emphasized how Todd is in God's Hands and we need to pray for his full and complete recovery. She asked if I had any more questions and I asked her what some of the words you wrote meant. She answered that "metastasis" was the spreading of cancer, but told me not to look up the other words I didn't know just yet, (cell carcinoma and renal adenoma) and said she would tell me later, after we heard the results this week.
...He wasn't feeling good after dinner, which he didn't really eat much of at all. I think he did too much tonight. He was trying to fix the dryer, then found some problems downstairs, then went out to work on the yard that Sue turfed up on her way out today. ugh. I kept telling him not to overdo it, and he said it was things that needed to be done and that he was feeling ok. then later he was actually moaning and said, "I'm really paying for it now." :( I wish he would just listen to me!! ugh.
January 4, 2005
I'm really discouraged and find myself holding back the tears more often today. We didn't even hear from the dr today. But Todd did get a call back from work about his disability pay. I stayed in the room and listened with a very heavy heart as Todd, for the first time, told the guy who was handling the "case" that he was just diagnosed with kidney cancer and wasn't even sure if he was going to make it. Those words hit me like a knife. He told me the guy asked if he was ok for funeral expenses, and he didn't even know. His full benefits will go for 8 months, then after that we are on our own. Just with medications alone, we'll be under. It looks so bad right now that I feel like someone is crushing me under this huge weight. I don't want tomorrow to come. I don't want to talk to that dr. I am so tired I can't see straight, and all I want to do is go to bed and sleep for at least a month. This is just so unbelievable. I hurt all over, Betty. I want to scream, but can't.
Todd's mood is really down today, so I'm trying hard not to let him know I'm aching inside as well. He asked me to hold him tonight before dinner, and I just kept choking back the tears and let him do the crying. I hate this so much.
Posted by Wendy at 5:17 PM