I got worked up enough about the pre-op appointment that I actually took one of my prescribed valium pills. It doesn't seem to have a whole lot of effect on me, but I definitely wasn't freaking out once we were there. So I guess it did its job. ;)
First we had to meet with a nurse and answer a bunch of questions. Then she sent us down to the lab. She had me sit in a comfy chair to wait... and I fell asleep!! Needless to say, I was much more relaxed than I had been back at home. ;) She started by doing an EKG. I had had one done once before long ago, so that test wasn't new - or scary. Then it was time for the blood test. I asked if I could just remain lying down on the bed, and Steve was able to go around to the other side to hold my hand. I always make it very clear that they should not tell me what's happening and never mention the B word. This helps immensely! So as I lay there, I told Steve to think of something to talk about.... he chose dessert!! Good choice!!!! ;) So we named all types of chocolate as the nurse got ready and did her job. It went by pretty quick and easy!! Hooray!! :) And this nurse actually abided by my wishes of not saying anything. (They often still think they're supposed to say something...fortunately, this one really "got it." ;) )
Then back to the nurse's office to talk some more....and then anesthesiologist came in. As they talked to me and realized my overall condition (other than just having a kidney removed), they both seemed surprised. This never makes me feel better. sigh. As Steve has always said, I've always enjoyed doing unique things... however, this is probably not one of the ways in life that I really wanted to be unique. ;)
The anesthesiologist was very nice, but apparently it will be one of his colleagues who will be on duty on Friday instead. We were told that all 3 are wonderful though.
I am to arrive at the hospital at noon on Friday. First, I will have radiation at 10am though. Then my surgery is scheduled for 2pm. There's always the possibility of a delay -- or even of them calling to move it up, if someone else's surgery is canceled. The surgery will last for 3 hours. Before surgery, 2 people are allowed to go in with me. So we still need to make decisions about which of my parents will come, who will stay with the kids that day, if there will be a rotation, etc. (My dad is flying back here on Thursday to be here for the surgery.) So surgery will be approximately from 2-5pm on Friday. Then they said I'd be in the recovery room from about 5-6:30pm. No one is allowed to visit me in the recovery room. I was quite disappointed in that. My only surgery experience is that of Kevin....twice. And of course, both times, we were able to be in the recovery room. But she said that only parents of children are allowed in there. Not spouses. :( My experience with Kevin also includes him totally flipping out when he woke up both times. But I was assured that this is common with children, and hopefully will not be the case with me!! Still, I really wish that Steve could be by my side when I awake.
After the recovery room, it is possible that they would send me to intensive care. But apparently, it's unlikely. But possible. If they do, Steve could go visit me there. But most likely, they will then send me to my room. I will have a private room, and Steve can definitely go there. I'm uncertain if my parents would be allowed into my room outside of the regular hospital visiting hours or not. But hopefully it will still be within hospital visiting hours once I arrive in my room anyway. The greatest news was.... Steve is allowed to spend the night in my room!!!!! :) :) So he plans to do that!!!! HOOORAY!!! Of course, he does need to spend some time at home with the kids over the few days that I'm in the hospital. But he plans to be with me at night -- and often during the day too! However, if I'm in intensive care the first night, he cannot stay.
I was told some pretty scary things about where things will be attached to me... such as an IV in my hand, an IV by my neck, and an epidural. And those things will be staying around for a couple days. ARRRGGHHH!!!!!! Ok, end of topic. Let's not discuss this one further... Just please pray for my peace and safety on this one. Not to mention other tubes going into other parts of my body, some of which may be removed by the time I'm awake. Please, God!!!! I was also told that I'll likely be set up to control my own pain meds dosage with a button. But then after the epidural discussion, maybe that will no longer be true? Or maybe I will have both? I think it was undetermined as of the time I left. And then my wise husband pointed out that I do need pain meds for things other than just the surgery area, such as my shoulder! Yay for Steve!! So I'm not sure what the verdict was there, but it sounds like they're going to take care of me.
Oddly enough, I felt more calm when I left this appointment than when I arrived. But they did look over my scans and said something about a couple possible small regions of cancer elsewhere that I hadn't been officially told about yet....but there's no point in worrying about those for now. We just need to keep chugging on. sigh. Oh, and apparently the one I had been told about this morning for the first time is actually on my hip. Then we ended the day by stopping by the urologist's office for some instructions on things I'm supposed to do the night before surgery. sigh.
Tuesday, September 16, 2008
Radiation and Nervousness
I had my 3rd radiation appointment this morning (2nd for the shoulder). It was moved to an earlier time today due to my pre-op appointment this afternoon.
The radiation part is easy. But it still sort of freaks me out. Hopefully I'll get over this with time. But the 3 women leave the room, and I'm left lying there alone, knowing that I'm not supposed to move at all, while this machine circles around me, making noises. It doesn't take long, but when I think about it, it freaks me out. And then I also manage to freak myself out by worrying that I'm going to move. Hopefully this will soon become more routine.
Today they had me meet with the radiation oncologist (the original one I met with last week) after the radiation. That all led to all sorts of fears creeping in as well. Of course, I'm nervous about the pre-op appointment this afternoon and the slowly approaching surgery date, so I'm sure that was adding to my anxiety. But they went through the list of symptom questions again. I'm going to skip some details on here, but it made me a little paranoid.
Then I did hear one piece of bad news in particular. On one of my scans from late last week, they found another "lesion" somewhere in my pelvic area. I asked if that means tumor, and he said yes. But he needs to look into it further now to see what should be done, etc. I probably shouldn't be freaked out at all, but it did scare me this time. So perhaps they'll start radiating that one soon too.
Another piece of somewhat bad news... We had miscounted the days in the hospital. When we were told 4-5 days, apparently that doesn't include Friday (the day of surgery). So the stay just got extended by a day, based on what we had thought. Ugh. And they did decide to radiate on Friday morning before I go to the hospital, but they'll skip Monday. Then perhaps they'll come get me on Tuesday. The radiation oncologist actually said he was going to come by to see me in the hospital. I was surprised.
Then another piece of good news / bad news. They weighed me today, and I've lost 2 lbs since last week. I guess it's just from nerves? Losing weight isn't such a bad thing. ;) But it did freak me out a little. sigh.
Then the doctor started talking a little bit about what might happen in terms of treatments after radiation and surgery, and that got me nervous too. I've been so focused on the radiation, which we know will get rid of the tumors -- and the surgery, which we know will get rid of the main tumor. So I've been keeping my mind off the stuff that will come afterwards. And being reminded today that the next steps are unknown and will require decisions just made me anxious. Like I said, I was anxious anyway due to my appointment this afternoon, the MRI tomorrow, and surgery Friday. Maybe it's time to start taking that valium prescription soon... ;)
But the GOOD news... The doctor took the little slip of paper which was for getting a weekly blood test at the hospital... and he ripped it into shreds and threw it away!!!!!!! :) :) HOORAY!!!!!! Thank you, God, for little (big!) blessings!!!!! :) :) I might need it eventually, but for now, the doctor decided there was no need to torture me. :)
The radiation part is easy. But it still sort of freaks me out. Hopefully I'll get over this with time. But the 3 women leave the room, and I'm left lying there alone, knowing that I'm not supposed to move at all, while this machine circles around me, making noises. It doesn't take long, but when I think about it, it freaks me out. And then I also manage to freak myself out by worrying that I'm going to move. Hopefully this will soon become more routine.
Today they had me meet with the radiation oncologist (the original one I met with last week) after the radiation. That all led to all sorts of fears creeping in as well. Of course, I'm nervous about the pre-op appointment this afternoon and the slowly approaching surgery date, so I'm sure that was adding to my anxiety. But they went through the list of symptom questions again. I'm going to skip some details on here, but it made me a little paranoid.
Then I did hear one piece of bad news in particular. On one of my scans from late last week, they found another "lesion" somewhere in my pelvic area. I asked if that means tumor, and he said yes. But he needs to look into it further now to see what should be done, etc. I probably shouldn't be freaked out at all, but it did scare me this time. So perhaps they'll start radiating that one soon too.
Another piece of somewhat bad news... We had miscounted the days in the hospital. When we were told 4-5 days, apparently that doesn't include Friday (the day of surgery). So the stay just got extended by a day, based on what we had thought. Ugh. And they did decide to radiate on Friday morning before I go to the hospital, but they'll skip Monday. Then perhaps they'll come get me on Tuesday. The radiation oncologist actually said he was going to come by to see me in the hospital. I was surprised.
Then another piece of good news / bad news. They weighed me today, and I've lost 2 lbs since last week. I guess it's just from nerves? Losing weight isn't such a bad thing. ;) But it did freak me out a little. sigh.
Then the doctor started talking a little bit about what might happen in terms of treatments after radiation and surgery, and that got me nervous too. I've been so focused on the radiation, which we know will get rid of the tumors -- and the surgery, which we know will get rid of the main tumor. So I've been keeping my mind off the stuff that will come afterwards. And being reminded today that the next steps are unknown and will require decisions just made me anxious. Like I said, I was anxious anyway due to my appointment this afternoon, the MRI tomorrow, and surgery Friday. Maybe it's time to start taking that valium prescription soon... ;)
But the GOOD news... The doctor took the little slip of paper which was for getting a weekly blood test at the hospital... and he ripped it into shreds and threw it away!!!!!!! :) :) HOORAY!!!!!! Thank you, God, for little (big!) blessings!!!!! :) :) I might need it eventually, but for now, the doctor decided there was no need to torture me. :)
Monday, September 15, 2008
Pain
I wanted to write about a depressing topic... pain. This feels pretty pathetic to write about, but this is what I'm dealing with - so I thought I should be honest.
I was on prescription pain medicine for 2 weeks before having my MRI. Then on that fateful day 1.5 weeks ago when the cancer was discovered, my doctor switched my pain medicine to something stronger (narcotics), recognizing that the pain of cancer on bones was quite intense. 5 days later, I was at the oncologist, and she switched my pain medication again, saying that I needed to be on something that lasted longer, so that I didn't go through pain every 4 hours when it was time for a new dose. So since last Wednesday, I've been on one prescription that lasts 12 hours and then another one just for "break through pain" that lasts 4 hours. Well, I'm needing the "break through pain" medication continually. So today, the radiation oncologist said that I need to talk to my oncologist about it in order to increase the level, agreeing that what I have going on is quite painful. So Steve talked to the oncologist's office for me later today, and they decided to start having me take the same medication every 8 hours instead of every 12 hours. Then still take the other as needed. Wow.... just a few weeks ago, I was worried about how much Advil I had been taking over a period of a few months. But I certainly feel justified in all my complaints now! ;) ha! We have a notepad by the pill bottles to track what I've taken when. Steve has mostly been taking care of making sure I'm getting the difference medications at the right now. :) He takes great care of me!!!
I've also been discovering over the past week that when the pain gets unbearable, a hot bath is a miraculous thing!!! And I've figured out the best seating arrangements for me. I spend most of my time in the swivel rocker in our family room, with a pillow behind my back for extra support - and using the kids' little Elmo couch as a short foot rest (a full height ottoman hurts too much). I can stay at the kitchen table briefly for a meal, if I sit on a pillow. And I've been bringing a pillow around to sit on at appointments, at church, and even at a restaurant on Sunday. We actually ate out for lunch on Sunday -- first time I've dared to do that in a couple weeks.
I was told that for the first couple days after radiation begins, the pain may actually be worse. Fun. But it hopefully will start to improve soon. The radiation oncologist today gave me all sorts of tips on handling pain meds at the hospital and that I should request to take my own pain meds, which last longer - so that I don't have to wait for a nurse to come to me with something that only lasts a few hours instead, since it could take the nurse an hour to get to me. This did not sound encouraging!! I have my pre-op appointment at the hospital tomorrow, so we definitely need to talk about this. (I'm pretty nervous about the pre-op appointment! It's at 1:45pm on Tuesday at the hospital.)
The radiation oncologist also told me that some patients describe the pain after kidney surgery to be as if someone pounded their ribs with a baseball bat. Oh, lovely. So what this made me realize is... I've already been having very intense pain on my left side for awhile (my shoulder). I can't even roll over in that direction to get out of bed (and yes, I sleep on the left side of the bed). And now, I will have a lovely incision on my right side which will feel like I've been pounded with a baseball bat. So I obviously won't be sleeping on that side either! And I'm supposed to be able to sleep??? Yikes!!! And I'm supposed to be able to roll over and get up?? Not! (I already usually need help getting up anyway.)
I told the doctor today that when both pain meds kick in and the pain actually goes away completely for awhile, I cannot keep my eyes open. They literally just keep closing. He said it's probably caused both by the medications themselves and from just finally being relaxed and out of pain (I had wondered which one was the case - and he said both).
A lot of the pain I experience (other than my shoulder) is down my left leg, in my butt, and specifically in the area of my tailbone (where there is a fracture from a tumor). I've had some pain in my left foot, and it is sometimes numb (I have 2 pinched nerves due to tumors). But my left shoulder has really gotten bad. It's been getting worse, and I really can't use that arm at all now. I am able to bend my elbow up like I'm marching, while keeping the arm against my side, but I can't make any movement that involves moving my arm out from my body or really even lifting any sort of weight with that arm. I'm constantly watching out for others to not move it, lean on it, squeeze it when hugging me, etc. I've had trouble getting dressed and undressed for the past month. And in the past week, I've started having Steve towel dry my hair, because I just can't do it. (What a wonderful husband I have!! :) ) I couldn't even raise my arm to pull my hair into a ponytail tonight, so Steve got his first experience at making a ponytail. :) So although baths have been helping my pains a lot, it's turning into quite the fiasco to get in and out of the tub, mostly due to my shoulder pain. I can't support myself with my left arm, and we have a deep garden tub. Thank goodness it's not my right arm though! And thank goodness that radiation began on it today!! Hopefully things will begin to improve soon... But I'm not looking forward to the pain that I will likely experience in the hospital this weekend. :(
Ok, that's enough of my depressing reality post. ;) Thanks as always for all the prayers!!!! I look forward to being on the road to recovery!!!!!! :) :)
I was on prescription pain medicine for 2 weeks before having my MRI. Then on that fateful day 1.5 weeks ago when the cancer was discovered, my doctor switched my pain medicine to something stronger (narcotics), recognizing that the pain of cancer on bones was quite intense. 5 days later, I was at the oncologist, and she switched my pain medication again, saying that I needed to be on something that lasted longer, so that I didn't go through pain every 4 hours when it was time for a new dose. So since last Wednesday, I've been on one prescription that lasts 12 hours and then another one just for "break through pain" that lasts 4 hours. Well, I'm needing the "break through pain" medication continually. So today, the radiation oncologist said that I need to talk to my oncologist about it in order to increase the level, agreeing that what I have going on is quite painful. So Steve talked to the oncologist's office for me later today, and they decided to start having me take the same medication every 8 hours instead of every 12 hours. Then still take the other as needed. Wow.... just a few weeks ago, I was worried about how much Advil I had been taking over a period of a few months. But I certainly feel justified in all my complaints now! ;) ha! We have a notepad by the pill bottles to track what I've taken when. Steve has mostly been taking care of making sure I'm getting the difference medications at the right now. :) He takes great care of me!!!
I've also been discovering over the past week that when the pain gets unbearable, a hot bath is a miraculous thing!!! And I've figured out the best seating arrangements for me. I spend most of my time in the swivel rocker in our family room, with a pillow behind my back for extra support - and using the kids' little Elmo couch as a short foot rest (a full height ottoman hurts too much). I can stay at the kitchen table briefly for a meal, if I sit on a pillow. And I've been bringing a pillow around to sit on at appointments, at church, and even at a restaurant on Sunday. We actually ate out for lunch on Sunday -- first time I've dared to do that in a couple weeks.
I was told that for the first couple days after radiation begins, the pain may actually be worse. Fun. But it hopefully will start to improve soon. The radiation oncologist today gave me all sorts of tips on handling pain meds at the hospital and that I should request to take my own pain meds, which last longer - so that I don't have to wait for a nurse to come to me with something that only lasts a few hours instead, since it could take the nurse an hour to get to me. This did not sound encouraging!! I have my pre-op appointment at the hospital tomorrow, so we definitely need to talk about this. (I'm pretty nervous about the pre-op appointment! It's at 1:45pm on Tuesday at the hospital.)
The radiation oncologist also told me that some patients describe the pain after kidney surgery to be as if someone pounded their ribs with a baseball bat. Oh, lovely. So what this made me realize is... I've already been having very intense pain on my left side for awhile (my shoulder). I can't even roll over in that direction to get out of bed (and yes, I sleep on the left side of the bed). And now, I will have a lovely incision on my right side which will feel like I've been pounded with a baseball bat. So I obviously won't be sleeping on that side either! And I'm supposed to be able to sleep??? Yikes!!! And I'm supposed to be able to roll over and get up?? Not! (I already usually need help getting up anyway.)
I told the doctor today that when both pain meds kick in and the pain actually goes away completely for awhile, I cannot keep my eyes open. They literally just keep closing. He said it's probably caused both by the medications themselves and from just finally being relaxed and out of pain (I had wondered which one was the case - and he said both).
A lot of the pain I experience (other than my shoulder) is down my left leg, in my butt, and specifically in the area of my tailbone (where there is a fracture from a tumor). I've had some pain in my left foot, and it is sometimes numb (I have 2 pinched nerves due to tumors). But my left shoulder has really gotten bad. It's been getting worse, and I really can't use that arm at all now. I am able to bend my elbow up like I'm marching, while keeping the arm against my side, but I can't make any movement that involves moving my arm out from my body or really even lifting any sort of weight with that arm. I'm constantly watching out for others to not move it, lean on it, squeeze it when hugging me, etc. I've had trouble getting dressed and undressed for the past month. And in the past week, I've started having Steve towel dry my hair, because I just can't do it. (What a wonderful husband I have!! :) ) I couldn't even raise my arm to pull my hair into a ponytail tonight, so Steve got his first experience at making a ponytail. :) So although baths have been helping my pains a lot, it's turning into quite the fiasco to get in and out of the tub, mostly due to my shoulder pain. I can't support myself with my left arm, and we have a deep garden tub. Thank goodness it's not my right arm though! And thank goodness that radiation began on it today!! Hopefully things will begin to improve soon... But I'm not looking forward to the pain that I will likely experience in the hospital this weekend. :(
Ok, that's enough of my depressing reality post. ;) Thanks as always for all the prayers!!!! I look forward to being on the road to recovery!!!!!! :) :)
Keep the Cold Away
I have a specific prayer request.... Please pray that I do not get a cold this week!! My mom has now come down with a cold, and we suspect that Kien may have one. Steve read information from the hospital, and he thinks that my surgery might have to get postponed if I were to get a cold... Aacck! So please pray that the cold stays far away from me!! (And that everyone else in the household stays or becomes healthy too!!) THANK YOU!!!!! :)
2nd Radiation Treatment and Shoulder
I had my 2nd radiation treatment for the tumors in my pelvic area / hip this afternoon. They started with that. Then they moved me into the other room to do the "set-up" procedures for the treatment on my left shoulder. It hurts so badly that I can barely move it to the precise locations required. I have to use my right arm to lift my left arm. Crazy! Praise God that this is going to get fixed!!! So they did all the scans and pictures...they drew on my shoulder...and then they were ready for the tattoos. So I had them bring in Steve again. :) It's always so nice to see my husband's sweet face enter the room after I've been lying there on a machine. :) So he held my hand while she gave me 3 more permanent dots. It hurt even less today. No big deal at all! Hooray! Although it did sting more later. And then she was spending some time dabbing it and made the mistake of mentioning the B word!! UGH!! ;) Anyway...after they did some analyzing...I was back in the treatment room for my first radiation treatment on my shoulder. They're radiating it from the top and the bottom. It's pretty quick and easy, but it does make me nervous to have to lie there so still as the technicians all leave the room and I get radiated. But then I was done! :) Back for more tomorrow...
The technicians and doctors there are all so great. When the one woman was leading me out, she started to give me a paper and tell me something...and suddenly, she realized she needed to stop. She told me to give her back the paper and that she's going to make the doctor tell me himself tomorrow, because she doesn't want to be the bad guy, since I've already told her she's so great! ha! ;) But I did hear the general news.... which is that I have to start having a weekly blood test. You've got to be kidding.... sigh.
The technicians and doctors there are all so great. When the one woman was leading me out, she started to give me a paper and tell me something...and suddenly, she realized she needed to stop. She told me to give her back the paper and that she's going to make the doctor tell me himself tomorrow, because she doesn't want to be the bad guy, since I've already told her she's so great! ha! ;) But I did hear the general news.... which is that I have to start having a weekly blood test. You've got to be kidding.... sigh.
New Oncologist!
My wonderful husband called the oncologist's office this morning who specializes in these new kidney cancer treatments, and he got me an appointment!! It's for 2 weeks from today -- on the morning after my birthday. Steve was disappointed that we have to wait 2 weeks. But in reality, this week is already pretty full, and I'm having radiation. Then surgery is Friday. So next week, I'm in the hospital and recovering at home. Then I will begin the following week by seeing this new oncologist. Hooray! Praise God!!! :)
Sunday, September 14, 2008
The Boys
Kien is only 15 months old, so of course, he has no understanding of what is going on. But I'm sad that I can't carry him around anymore at this point. It's been a few weeks now since I've been able to. Fortunately, I can still sit to hold him, including feeding him a bottle. :)
Kevin, on the other hand, is 4 years old. He has known for months that my back has been in pain. And he has continually prayed about it. He has also been aware that it has gotten worse. Last week, we opted for my mom to stay home with the boys while we went to church, so Kevin wouldn't be exposed to the emotion that would surely take place that morning -- the first morning at church after finding out about my cancer. That was definitely for the best. His teachers at preschool also know, but they've done a great job of not talking about it in front of him. His teachers have even prayed for me during their morning prayer time before the kids arrive in the morning. But over the course of the week, Kevin seems to be more aware of things. People have come to visit Mommy and Daddy and to pray with us, while Grandma takes the boys upstairs or outside. And Mommy and Daddy (and Grandpa) have gone to many appointments during the course of the week. So Kevin has been becoming aware that Mommy isn't feeling well. Lately, he usually interjects prayers of his own at dinnertime. And this week, his prayer has usually been, "Thank you for creating us. Thank you for creating Mommy. Please help Mommy get better soon."In the past couple days, I've been gradually talking to him about things a little more, saying that I have to see doctors to help me get better. Each time I mention going to a doctor, he gets very concerned that I'm going to have a shot. And he cried when he saw my bandage from the IV the other day. He's such a sweet little boy! Then this morning, I decided it was time to tell him I'm going to be having surgery. He knows about surgery, because he had eye surgery in January. He was pretty shocked when I first told him. He cried and said, "No!" But I reminded him that his doctor fixed his eye, and that the doctor is going to make me better too. After we talked this through, he seemed much more ok with the idea. I just wanted to be sure he heard it from me this morning before we went to church and he heard it from someone else. He has now asked me a couple times today when I'll be having surgery and how many more days it will be. I have not yet though told him that I will be staying in the hospital for a few days. That is a new concept to him, and he will NOT be happy about that one at all. So we need to wait to introduce these things gradually. In the meantime, he's certainly happy to have Grandma here taking care of him. :)
This afternoon, I got an email from a friend who taught Kevin's class at church this morning. She said, "He quickly brought his request to pray for your back and your surgery when I asked for prayer requests." What a precious boy!!
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