Karin did great today. She really wasn't keen on getting out of bed, knowing it would hurt. But she was brave and did it. It was certainly a challenge... she needed help getting up of course because of the incision, but things were complicated by her left shoulder being very painful to even touch (from the cancer), and her right shoulder also being in pain (side effect of pressure during surgery we're told), and her right thigh being so numb that she didn't really have much control over that leg... So basically we could work with a hand on her back and some support via her right arm. So we couldn't really help too much and Karin had to put in a lot of effort. The hard part for her is that despite the pain meds, as soon as she moved in any way, her left shoulder bone pain was very intense. She shed some tears but she got through it.. got into a chair, where she stayed for a couple hours and did very well, during which time her mom left the kids and came to visit. The switch back to bed was equally tough. Once there, she quickly fell asleep, and awoke 1.5 hours later in pain at her side. It took 1.5 hours to really get the pain under control again, with another 30 minutes of sleep in the middle, because she was so exhausted.
Before that pain started, I went home for an hour while Karin's mom was visiting to collect some things and spend a little time with the kids. Kevin was happy to see me but not at all weepy and asked no questions.. seemed like he actually had forgot where mommy was, but who knows.
When Karin was feeling well mid day, we decided to have the kids visit after dinner. Unfortunately, by the time Grandpa and Grandma brought them to visit, Karin was in pretty bad shape. She could hardly speak (just a whisper) and couldn't even smile. She felt really bad about Kevin seeing her this way. We assured Kevin that mommy will be doing better tomorrow. We ketp the visit very short, and he didn't get to touch mommy, just blow a kiss. He was upset to leave, but his emotions change quickly so I'm sure he was ok before long.
We finally got Karin's pain under control and she is sleeping again now. I pray she will wake pain-free too.
Saturday, September 20, 2008
Surgery First night
Karin woke every 1-2 hours through the night. I kept a log of when she pushed the button to trigger a release of pain medicine. She did every time she woke, but she was only in a slight discomfort most times. I dozed off in a chain next to her for a few hours.
At 4:30am a nurse came in to take a blood draw for testing. Karin woke up not feeling well and definitely not expecting a needle stick in the night, so tensed up and was hurting. The nurse said the doctors wanted to have the results before they came in, but she would come back in a few hours. The night nurse that we have came in every 2 hours to check on us and check equipment and another nurse came in to take blood pressure every few hours. The night nurse is a very sweet soft-spoken Indian woman. Around 6am she was telling us some about the day ahead.. that Karin will need to get out of bed briefly today, and will eat a light breakfast (jello and broth). Karin was expressing fear about the getting out of bed, and this night nurse spoke very comfortingly of the difficulty, acknowledging that she is young and this is not fair, then encouraging Karin to focus on the goal of getting well and getting all of this behind her (the surgery and the cancer).. to think of a year from now looking back and being able to laugh about it, resolving to reach that goal no mater what stands in her way, then taking each day and moment a step at a time. She spoke like a counselor - comforting yet guiding and encouraging.
At 6am the other nurse came back to draw blood, and Karin was courageous and hardly flinched.
At 8am, breakfast came in, and a nurse help me (because we were nervous) raise the head of the bed, which is at a 45 degree angle now. Karin had a few spoons of jelly and broth and sips of apple juice. Her stomach feels odd, and she doesn't have an appetite, so she decided to stop for now.
Then she realized that her right thigh is totally numb and she cannot flex it - she cannot raise her right knee. The nurse aide came in around this time and we told her, and she said she'd get the regular nurse. We were not panicking, but were certainly were a bit alarmed. While waiting for the nurse, I realized that this is just below the incision, which is getting local anesthetic via the epidural, so then I felt better realizing that it made sense for the local to spread to numbing nearby areas, just like when a dentist numbs your teeth and your lip goes numb too. When the nurse arrived he said that could be it, he checked her and verified everything else was good, then called the anesthesiologist who said it was normal due to the local in the epidural.
At 4:30am a nurse came in to take a blood draw for testing. Karin woke up not feeling well and definitely not expecting a needle stick in the night, so tensed up and was hurting. The nurse said the doctors wanted to have the results before they came in, but she would come back in a few hours. The night nurse that we have came in every 2 hours to check on us and check equipment and another nurse came in to take blood pressure every few hours. The night nurse is a very sweet soft-spoken Indian woman. Around 6am she was telling us some about the day ahead.. that Karin will need to get out of bed briefly today, and will eat a light breakfast (jello and broth). Karin was expressing fear about the getting out of bed, and this night nurse spoke very comfortingly of the difficulty, acknowledging that she is young and this is not fair, then encouraging Karin to focus on the goal of getting well and getting all of this behind her (the surgery and the cancer).. to think of a year from now looking back and being able to laugh about it, resolving to reach that goal no mater what stands in her way, then taking each day and moment a step at a time. She spoke like a counselor - comforting yet guiding and encouraging.
At 6am the other nurse came back to draw blood, and Karin was courageous and hardly flinched.
At 8am, breakfast came in, and a nurse help me (because we were nervous) raise the head of the bed, which is at a 45 degree angle now. Karin had a few spoons of jelly and broth and sips of apple juice. Her stomach feels odd, and she doesn't have an appetite, so she decided to stop for now.
Then she realized that her right thigh is totally numb and she cannot flex it - she cannot raise her right knee. The nurse aide came in around this time and we told her, and she said she'd get the regular nurse. We were not panicking, but were certainly were a bit alarmed. While waiting for the nurse, I realized that this is just below the incision, which is getting local anesthetic via the epidural, so then I felt better realizing that it made sense for the local to spread to numbing nearby areas, just like when a dentist numbs your teeth and your lip goes numb too. When the nurse arrived he said that could be it, he checked her and verified everything else was good, then called the anesthesiologist who said it was normal due to the local in the epidural.
Friday, September 19, 2008
Pain Free :-)
Karin slept for an hour, then woke up at 9pm. She wasn't in any pain. Yay!! I've really been worried that she might be in pain when she woke up, so that was such a relief to me that she is feeling ok :-) Her mouth was a little dry, but I have ice chips I can give her that help wet her mouth. She was awake for 15 minutes, then slept again.
Karin's in her room
I've was having trouble with my wireless connection from the room, and was too busy talking to Karin and the nurses to get it working, so sorry for the delayed blog posting..
Karin arrived on a wheeled bed around 6:30pm.. awake but very sedated. She said a weary hi but couldn't give any facial expression.
Then we were sent to wait in the hall while they transfered her to the room bed. She screamed when they did it ;-( She told me later that it was her shoulder that hurt when they moved her, not her side.
Thankfully we questioned the nurses about what is being done with her pain medication, because they were not doing all that was ordered... because Karin has such existing pain, and because her side will have a lot of pain, the anesthesiologist told us before surgery that she would have an epidural for numbing her side, and normally they would give local pain meds and narcs via that, but that since she has existing pain at other sights, they would give only the local via the epidural and narcs via IV. Well, because this was unusual, the nurses saw the system wide narcs and thought that was all, they did not see the order for the pain meds via the epidural. We asked the nurses and when they said she wasn't going to get anything via the epidural - we pushed them to check again, telling them what we had been told previously... they resisted but I persisted and they then found the order and went to get equipment to hook up to her epidural... unfortunately it took until 7:30pm to get that going (apparently they were working on it as fast as possible but it takes a long time to get set-up). Karin was in increasing pain at her side during the period and we were all getting frustrated.
Her mouth was also miserably dry and the floor nurses said it wasn't safe to wet her mouth. Finally when the recovery room nurse came back with the pump for her epidural, she said that it was totally safe for Karin to be getting some ice chips to help wet her mouth, and that she already had some within minutes after surgery and showed no problems.
It took until 8pm before her pain finally got under control and she fell asleep.
Karin arrived on a wheeled bed around 6:30pm.. awake but very sedated. She said a weary hi but couldn't give any facial expression.
Then we were sent to wait in the hall while they transfered her to the room bed. She screamed when they did it ;-( She told me later that it was her shoulder that hurt when they moved her, not her side.
Thankfully we questioned the nurses about what is being done with her pain medication, because they were not doing all that was ordered... because Karin has such existing pain, and because her side will have a lot of pain, the anesthesiologist told us before surgery that she would have an epidural for numbing her side, and normally they would give local pain meds and narcs via that, but that since she has existing pain at other sights, they would give only the local via the epidural and narcs via IV. Well, because this was unusual, the nurses saw the system wide narcs and thought that was all, they did not see the order for the pain meds via the epidural. We asked the nurses and when they said she wasn't going to get anything via the epidural - we pushed them to check again, telling them what we had been told previously... they resisted but I persisted and they then found the order and went to get equipment to hook up to her epidural... unfortunately it took until 7:30pm to get that going (apparently they were working on it as fast as possible but it takes a long time to get set-up). Karin was in increasing pain at her side during the period and we were all getting frustrated.
Her mouth was also miserably dry and the floor nurses said it wasn't safe to wet her mouth. Finally when the recovery room nurse came back with the pump for her epidural, she said that it was totally safe for Karin to be getting some ice chips to help wet her mouth, and that she already had some within minutes after surgery and showed no problems.
It took until 8pm before her pain finally got under control and she fell asleep.
In the room
We were just brought to Karin's room. They said she's in some pain, but will be here in about 10 minutes..
Surgery Done !
We were told at 4:40 that surgery was done. It started late and so looks like it was only 2 hours (out of the scheduled 3 hours), so we knew that was a good sign even before we spoke to the doctor.
A little bit later we spoke with the surgeon. Everything went well and Karin is in the recovery room. We asked if she would be well enough on Tuesday to be taken by ambulance over to the nearby radiation oncology office to receive radiation treatment that day, and he said "sure, if she's even still in the hospital - she might be home". He said that since she's young and strong he expects she will recover from surgery well and she can go home as soon as she can eat well and the pain is managed well by oral medication. He said she'll be able to go up and down stairs at that point (Grant asked a smart question about her sleeping upstairs). He said she should be staying in a private room tonight (ie, she's in good stable condition and won't need the close monitoring of ICU). So I'll be sleeping at the hospital tonight.
So now we wait some more. We might be able to see her in the recovery room, but more likely she will first be moved to her private room first and we'll see her there. We've been told it could be 2 hours, but I wouldn't be surprised if it was just 30-60 minutes if she's feeling well enough when she wakes up in recovery.
We thank God for another day of blessing.
A little bit later we spoke with the surgeon. Everything went well and Karin is in the recovery room. We asked if she would be well enough on Tuesday to be taken by ambulance over to the nearby radiation oncology office to receive radiation treatment that day, and he said "sure, if she's even still in the hospital - she might be home". He said that since she's young and strong he expects she will recover from surgery well and she can go home as soon as she can eat well and the pain is managed well by oral medication. He said she'll be able to go up and down stairs at that point (Grant asked a smart question about her sleeping upstairs). He said she should be staying in a private room tonight (ie, she's in good stable condition and won't need the close monitoring of ICU). So I'll be sleeping at the hospital tonight.
So now we wait some more. We might be able to see her in the recovery room, but more likely she will first be moved to her private room first and we'll see her there. We've been told it could be 2 hours, but I wouldn't be surprised if it was just 30-60 minutes if she's feeling well enough when she wakes up in recovery.
We thank God for another day of blessing.
Surgery started
We got paged and got to see Karin again, after her epidural was in, she was a little doped up, but she was proud of herself for having 'do it' -- she had to be awake for the epidural being inserted, which she was scared about. The epidural will completely numb the surgery area so she's not in pain during or after surgery.
We were told the doctor had arrived, and she was being wheeled into the surgery room as we headed back to the waiting room.
I've been fasting with Karin since midnight, but both the nurse and Karin asked me to eat while she is in surgery, because I'll not want to leave her afterwards, and I'll need to be in good shape to be supportive for her afterwards. So her dad and I are heading to the cafeteria.
We were told the doctor had arrived, and she was being wheeled into the surgery room as we headed back to the waiting room.
I've been fasting with Karin since midnight, but both the nurse and Karin asked me to eat while she is in surgery, because I'll not want to leave her afterwards, and I'll need to be in good shape to be supportive for her afterwards. So her dad and I are heading to the cafeteria.
The Waiting has Started...
We spent some time with some wonderful nurses that said they too will be praying for Karin during the procedure. Karin was of course anxious but being courageous. She's been wheeled into a separate waiting area and we were sent back to the waiting room. The surgeon apparently is running late arriving at the hospital, so we did not get to talk to him beforehand. Pray that despite the delay getting started all will go smoothly and calmly.
10 Years Ago Today
10 years ago today (on September 19, 1998), Steve and I went to the Santa Cruz Beach Boardwalk - which is where we had met on a "20something" retreats 4 months prior. He took me to an old fashioned photo studio, where I dressed up like a Southern Belle and he like a Southern Gentleman for a fun photo shoot. And as was already preplanned with the studio (but was a secret to me, of course), when the photo shoot began, Steve pulled out a ring. :) And he asked me to marry him!!
I said, "Yes." :)
And they lived happily ever after.... :)
Surgery Day
We're off to the hospital soon. I had a radiation appointment at 10am this morning. Steve let me sleep in, so I woke up at 9:15am! Wow! It was great to be able to sleep, but there was so much I wanted to be able to do last night and this morning -- but I was too sick last night. sigh. Oh well. Not much that can be done about it now. I was awake a couple times in the night, and Steve gave me my pain medications when needed. So it was a great thing that I was then out of pain enough to sleep in that late!! Hooray!! :)
We need to leave in about 45 minutes, so I'm just taking some final moments on my computer. My parents took the boys for a walk, because I really need some peace.
I had been avoiding mentioning my location on the blog, but I decided to go ahead and say where I'm going to be. I'm going to be at WakeMed Cary. I'm sure that once I'm feeling well enough, I'd love to have visitors. So please watch for Steve to post when I'm ready for that. :)
We're to be at the hospital at noon. My surgery is scheduled for 2pm. Of course, I would sooo appreciate all your prayers at that time and throughout the afternoon!!! They said it will probably last about 3 hours. Then I'll be in recovery, and Steve won't be able to visit me there. After 1-2 hours, I will hopefully be taken to my private room, where Steve can even spend the night with me. But it's also possible that I could be taken to intensive care. Steve can visit me there, but obviously, he can't stay.
I'm feeling anxious today and quite edgy, to say the least. But I'm trying to keep in mind that this is just yet another procedure this afternoon, like the many procedures I've been going through for the past 2 weeks. But I am scared. Thank you soooo much for all your love and prayers!!!!!!
We need to leave in about 45 minutes, so I'm just taking some final moments on my computer. My parents took the boys for a walk, because I really need some peace.
I had been avoiding mentioning my location on the blog, but I decided to go ahead and say where I'm going to be. I'm going to be at WakeMed Cary. I'm sure that once I'm feeling well enough, I'd love to have visitors. So please watch for Steve to post when I'm ready for that. :)
We're to be at the hospital at noon. My surgery is scheduled for 2pm. Of course, I would sooo appreciate all your prayers at that time and throughout the afternoon!!! They said it will probably last about 3 hours. Then I'll be in recovery, and Steve won't be able to visit me there. After 1-2 hours, I will hopefully be taken to my private room, where Steve can even spend the night with me. But it's also possible that I could be taken to intensive care. Steve can visit me there, but obviously, he can't stay.
I'm feeling anxious today and quite edgy, to say the least. But I'm trying to keep in mind that this is just yet another procedure this afternoon, like the many procedures I've been going through for the past 2 weeks. But I am scared. Thank you soooo much for all your love and prayers!!!!!!
The Blog Continues...
Steve will be the official blogger while I'm in the hospital. :) Apparently the hospital does have wireless, so I think he will even be posting this afternoon. And hopefully I'll eventually feel well enough in the hospital to post something myself.
And... you can even email me in the hospital! :) Of course, you can just continue to post comments on the blog or send me emails, and I will see those eventually. Hopefully I will be reading them in the hospital in a couple days. But the hospital also provides a way to email patients. So you can send a message via a web form, then apparently they print it out and deliver it to my room. Pretty cool! :) Oops - I did just see that the messages are only delivered on weekdays though. So I wouldn't receive anything this weekend until Monday. But anyway, I will pass along the link... :)
http://www.wakemed.org/body.cfm?id=473&oTopID=46
And... you can even email me in the hospital! :) Of course, you can just continue to post comments on the blog or send me emails, and I will see those eventually. Hopefully I will be reading them in the hospital in a couple days. But the hospital also provides a way to email patients. So you can send a message via a web form, then apparently they print it out and deliver it to my room. Pretty cool! :) Oops - I did just see that the messages are only delivered on weekdays though. So I wouldn't receive anything this weekend until Monday. But anyway, I will pass along the link... :)
http://www.wakemed.org/body.cfm?id=473&oTopID=46
Twas the Night Before Surgery
....and all through the house, things have not been happy. sigh. But at least the children are nestled all snug in their beds!! ;)
Actually, it wasn't all bad. Part of it was wonderful. A group of about 11 friends came over this evening to pray for me. And that was awesome!!! I started by asking if Kevin could please stay for a few minutes. When people have come over to pray thus far, he has been ushered upstairs with my mom. I thought it would be significant for him to fully understand why this large group of people gathered in our home tonight. And Kevin loves to pray. So... my idea was that we could start by praying with Kevin for a couple minutes. Then he could say good night to everyone and go up to read books with Grandma. I explained all this to him ahead of time, and of course, he wanted to do it -- and he did promise me that he would obey and go upstairs when it was time. And he did!!! :)
I am soooo glad we did this. It was fabulous. Steve started by praying, and then Kevin, in true Kevin form, immediately chimed in. It pretty much went back and forth between the two of them. Of course, I'm Kevin's mother and am biased.... but I find his prayers to be astounding fora 4-year-old. And he sat here (in his tiny chair, which he carried in from the kitchen in order to join the circle) and prayed out loud in front of 14 adults. And it wasn't brief. He prayed quite a bit. He is an amazing child!! And just this morning, he and I had talked about forgiving others and asking God for forgiveness. And from that conversation, he added that into his prayer!!! He even asked God for forgiveness for things that he has done wrong!!!! What an amazing child. Praise God for the precious gift of Kevin and for the amazing faith and relationship he is already developing with Jesus Christ at such a young age.
And backing up a bit... this morning when I got up, Kevin was alone in his room. Lately, my mom has taken responsibility for getting up both boys. So I was glad to have this special moment to go in Kevin's room and be alone with him. And I offered to read him a book. He chose a book of God's Promises, which he said that Bockba Nina had read to him too. I purchased it for him awhile ago. It is just a book of verses, which are God's promises from the Bible, along with age-appropriate pictures. So Kevin and I sat together, and we read through the entire book. What a blessing to me to read this today!! Along the way, Kevin sometimes asked questions -- such as when we got into the discussion about forgiveness, which I mentioned above. It was a very special time together. Then afterwards, I asked him if he remembered what would be happening tomorrow. So we talked about the surgery. And I reminded him that when he had eye surgery in January, we brought him home and he had to rest for a few days on the couch. He said he remembered. So I told him that I won't be able to do that. After my surgery, I'm going to have to rest at the hospital. I will have to sleep there for a few days. He was very upset about this, as I knew he would be. :( He cried. Before I even brought this up, he told me that he has been missing me. Poor sweet boy. We've been very busy with appointments lately, and we were even at the MRI all last night and weren't home at bedtime. So he cried about my surgery and having to stay in the hospital. But it turns out that he was most upset about me getting shots. No, I didn't mention shots. This is just his greatest fear for me. What a sweetheart.
So when he prayed for me tonight with everyone here, he prayed about Mommy getting shots. And he also prayed that I would feel better soon so that I can play with him again. I wish I remembered all that he said. It was all so precious and made me want to cry. At one point, there was some silence, and he said, "Daddy, it's your turn." ha! :)
Then afterwards, Kevin said good night and willingly went upstairs. Then I was able to share some with the adults and then they all prayed for me. What a blessing!!! We have a wonderful church family. :)
When everyone stood up to leave, I stood up as well - and immediately, my legs began to hurt. So I didn't even try to play the polite game this time. I sat back down. But the pain started to increase. It eventually became quite severe this evening. Steve called the oncologist's office and an after-hours doctor returned his call. Steve described me as only being able to pace the floor and moan in pain, which the doctor described as "severe" pain. (I will agree.) Steve had called the oncologist's office this morning, and he spoke to a nurse about the fact that I am still in pain despite the pain meds. So she increased my dosage again -- but unfortunately, there was a miscommunication. She didn't spell everything out well enough, and Steve made an incorrect assumption as a result. So I ended up taking LESS medicine today than I should have. And that's how I ended up in so much pain. Fortunately, the doctor was able to help -- and after about an hour after taking more medicine, I was able to cope again. But wow -- it was awful. He also increased what my dosage should be overall as well.
Then I also had instructions to take 3 times the regular dosage of some over-the-counter meds tonight. I will completely skip the details....but some of you may understand what I'm talking about. It was in the interest of surgery prep.... and around the time I was experiencing such pain, I then also became sick from the surgery prep meds. What a HORRIBLE evening!! I am obviously doing much better now and plan to get to bed very soon. But I was so upset that I was spending my final evening before surgery in this way. Thank you God that I got beyond it!!! But of course, as always, I feel like I have a huge to-do list that I wanted to accomplish before being away for a week. And I'm nervous about leaving my children. And nervous about surgery. You name it...I'm probably nervous about it. ;) But I know that God will be with me and that so many are praying for me. Thank you!!!!
Actually, it wasn't all bad. Part of it was wonderful. A group of about 11 friends came over this evening to pray for me. And that was awesome!!! I started by asking if Kevin could please stay for a few minutes. When people have come over to pray thus far, he has been ushered upstairs with my mom. I thought it would be significant for him to fully understand why this large group of people gathered in our home tonight. And Kevin loves to pray. So... my idea was that we could start by praying with Kevin for a couple minutes. Then he could say good night to everyone and go up to read books with Grandma. I explained all this to him ahead of time, and of course, he wanted to do it -- and he did promise me that he would obey and go upstairs when it was time. And he did!!! :)
I am soooo glad we did this. It was fabulous. Steve started by praying, and then Kevin, in true Kevin form, immediately chimed in. It pretty much went back and forth between the two of them. Of course, I'm Kevin's mother and am biased.... but I find his prayers to be astounding fora 4-year-old. And he sat here (in his tiny chair, which he carried in from the kitchen in order to join the circle) and prayed out loud in front of 14 adults. And it wasn't brief. He prayed quite a bit. He is an amazing child!! And just this morning, he and I had talked about forgiving others and asking God for forgiveness. And from that conversation, he added that into his prayer!!! He even asked God for forgiveness for things that he has done wrong!!!! What an amazing child. Praise God for the precious gift of Kevin and for the amazing faith and relationship he is already developing with Jesus Christ at such a young age.
And backing up a bit... this morning when I got up, Kevin was alone in his room. Lately, my mom has taken responsibility for getting up both boys. So I was glad to have this special moment to go in Kevin's room and be alone with him. And I offered to read him a book. He chose a book of God's Promises, which he said that Bockba Nina had read to him too. I purchased it for him awhile ago. It is just a book of verses, which are God's promises from the Bible, along with age-appropriate pictures. So Kevin and I sat together, and we read through the entire book. What a blessing to me to read this today!! Along the way, Kevin sometimes asked questions -- such as when we got into the discussion about forgiveness, which I mentioned above. It was a very special time together. Then afterwards, I asked him if he remembered what would be happening tomorrow. So we talked about the surgery. And I reminded him that when he had eye surgery in January, we brought him home and he had to rest for a few days on the couch. He said he remembered. So I told him that I won't be able to do that. After my surgery, I'm going to have to rest at the hospital. I will have to sleep there for a few days. He was very upset about this, as I knew he would be. :( He cried. Before I even brought this up, he told me that he has been missing me. Poor sweet boy. We've been very busy with appointments lately, and we were even at the MRI all last night and weren't home at bedtime. So he cried about my surgery and having to stay in the hospital. But it turns out that he was most upset about me getting shots. No, I didn't mention shots. This is just his greatest fear for me. What a sweetheart.
So when he prayed for me tonight with everyone here, he prayed about Mommy getting shots. And he also prayed that I would feel better soon so that I can play with him again. I wish I remembered all that he said. It was all so precious and made me want to cry. At one point, there was some silence, and he said, "Daddy, it's your turn." ha! :)
Then afterwards, Kevin said good night and willingly went upstairs. Then I was able to share some with the adults and then they all prayed for me. What a blessing!!! We have a wonderful church family. :)
When everyone stood up to leave, I stood up as well - and immediately, my legs began to hurt. So I didn't even try to play the polite game this time. I sat back down. But the pain started to increase. It eventually became quite severe this evening. Steve called the oncologist's office and an after-hours doctor returned his call. Steve described me as only being able to pace the floor and moan in pain, which the doctor described as "severe" pain. (I will agree.) Steve had called the oncologist's office this morning, and he spoke to a nurse about the fact that I am still in pain despite the pain meds. So she increased my dosage again -- but unfortunately, there was a miscommunication. She didn't spell everything out well enough, and Steve made an incorrect assumption as a result. So I ended up taking LESS medicine today than I should have. And that's how I ended up in so much pain. Fortunately, the doctor was able to help -- and after about an hour after taking more medicine, I was able to cope again. But wow -- it was awful. He also increased what my dosage should be overall as well.
Then I also had instructions to take 3 times the regular dosage of some over-the-counter meds tonight. I will completely skip the details....but some of you may understand what I'm talking about. It was in the interest of surgery prep.... and around the time I was experiencing such pain, I then also became sick from the surgery prep meds. What a HORRIBLE evening!! I am obviously doing much better now and plan to get to bed very soon. But I was so upset that I was spending my final evening before surgery in this way. Thank you God that I got beyond it!!! But of course, as always, I feel like I have a huge to-do list that I wanted to accomplish before being away for a week. And I'm nervous about leaving my children. And nervous about surgery. You name it...I'm probably nervous about it. ;) But I know that God will be with me and that so many are praying for me. Thank you!!!!
Thursday, September 18, 2008
More Meals
Thank you again so much to all who have been bringing us such wonderful meals!!! And to those who signed up on the care calendar!!!! :)
We only set up the calendar through October 1, and it is already full -- with quite a few people still asking how to provide us meals. So at the suggestion of some friends tonight, we extended the calendar through the month of October. I guess reality is that we will still be needing a lot of help for awhile. I won't be able to do much still, and my mom will be quite busy with the boys. So since so many people are eager to help, we're eager to accept!! :) THANK YOU!!!!! So again, if you need the care calendar info, just let me know. The web site is www.carecalendar.org. But I have to send you the login information.
We only set up the calendar through October 1, and it is already full -- with quite a few people still asking how to provide us meals. So at the suggestion of some friends tonight, we extended the calendar through the month of October. I guess reality is that we will still be needing a lot of help for awhile. I won't be able to do much still, and my mom will be quite busy with the boys. So since so many people are eager to help, we're eager to accept!! :) THANK YOU!!!!! So again, if you need the care calendar info, just let me know. The web site is www.carecalendar.org. But I have to send you the login information.
Good News and Bad News
At my radiation appointment today, I found out very good news.... now that all my scanning is complete (after my MRI last night), they now know that I have NO tumors in my brain!!!!! I hadn't even wanted to discuss this possibility previously, but I assumed it was probably clear that this is why they were performing an MRI of my head. So as Steve said, they scanned my brain and found nothing there. (ha ha ha)
Now for the bad news... Steve looked over my bone scans a week ago and saw something himself and contacted the doctor. He decided to not tell me about it until after my MRI, otherwise I would be really scared until we had more answers. So I do agree that he was right. I would have been petrified. But he did tell me this afternoon, and nevertheless, I still did not take it well. Although I do not have any tumors in my brain, I do have a spot on my skull. That still scares me to death. I was quite shocked. Apparently Steve and my parents have known this all week. Had I known, I would have been even more afraid, thinking that there could likely be a brain tumor as well. So it was definitely nicer to find out in the context of already knowing that a brain tumor does not exist. But that still didn't make this "good news" for me. I had a tough time dealing with that piece of info this afternoon.
So anyway, Steve talked to the radiation oncologist on the phone this afternoon. The scans are all in. The overall verdict is that I have the one large tumor in my right kidney. I have 4 tumors (one is fairly large) in my pelvic / hip region on the right side, as well as some bone metastasis (which caused the fracture in my last vertebra). I have a small tumor in my mid-spine, as well as some bone metastasis. Then I have bone metastasis in my left shoulder and a spot of cancer on my skull on the right side.
The main "new" pieces of info here were confirming the spot on my mid-spine, the tumor on my right hip, and the spot on my skull. This didn't make for a happy afternoon. sigh. We don't know what the treatment plan is yet, but there are treatments available - according to Steve and my mom. I guess we will learn more after surgery.
Now for the bad news... Steve looked over my bone scans a week ago and saw something himself and contacted the doctor. He decided to not tell me about it until after my MRI, otherwise I would be really scared until we had more answers. So I do agree that he was right. I would have been petrified. But he did tell me this afternoon, and nevertheless, I still did not take it well. Although I do not have any tumors in my brain, I do have a spot on my skull. That still scares me to death. I was quite shocked. Apparently Steve and my parents have known this all week. Had I known, I would have been even more afraid, thinking that there could likely be a brain tumor as well. So it was definitely nicer to find out in the context of already knowing that a brain tumor does not exist. But that still didn't make this "good news" for me. I had a tough time dealing with that piece of info this afternoon.
So anyway, Steve talked to the radiation oncologist on the phone this afternoon. The scans are all in. The overall verdict is that I have the one large tumor in my right kidney. I have 4 tumors (one is fairly large) in my pelvic / hip region on the right side, as well as some bone metastasis (which caused the fracture in my last vertebra). I have a small tumor in my mid-spine, as well as some bone metastasis. Then I have bone metastasis in my left shoulder and a spot of cancer on my skull on the right side.
The main "new" pieces of info here were confirming the spot on my mid-spine, the tumor on my right hip, and the spot on my skull. This didn't make for a happy afternoon. sigh. We don't know what the treatment plan is yet, but there are treatments available - according to Steve and my mom. I guess we will learn more after surgery.
Overwhelmed by Love and Care
Thank you to all of you!!! The love, care, encouragement, tangible help, and prayers have just been amazing!!!! Even just that first weekend, I couldn't believe all the people who contacted me -- including family members who I don't usually have the privilege of talking to on the phone! :) I've just been stunned by the outpouring of love and concern for me and my family. Thank you.
I have still been keeping track of those who have said that they are praying for me. Because that is the greatest gift of all!!! God can do anything. And I know that He is helping me daily. I do not believe the expression (expression, not verse) that God will not give me more than I can handle -- because first of all, God did not give me cancer. And secondly, this is way more than I can handle -- thus creating my deep need and dependence on God. I also know that He is allowing a situation to be set up where His glory is going to be seen by literally hundreds of people as they watch my story unfold and how God will work and already has been working in my life. Anyway, I now have EIGHT PAGES of names listed in my journal -- names of people or even of whole organizations (church prayer chains, etc.) who are praying for me!!! It is incredible to see. And I imagine that there are even others that I don't know about, based on the surprising emails I receive everyday -- even from people that I do not know personally. By the way, I should add here that I apologize if you have written or called and I have not replied. I am working on a "no guilt" philosophy in life though, which is a new thing for me. ;) ha. And I keep reminding myself that my doctor specifically said that I need to keep my focus on myself right now. So although I truly do feel badly that I have not been able to reply to everyone who has contacted me, I am following the advice that has been given -- and I'm working on the "no guilt" part too. ;) But THANK YOU for everything that each of you has done for me -- including all the wonderful supportive and encouraging messages!!!!!!! They mean sooo much to me!!!! :)
I have even received sweet surprises along the way!! Flowers and plants have arrived to cheer up our home. Cards were overtaking our mantle, so my mom has now climbed up on a chair to line them across the top of the built-in shelving unit in our family room. They are a joy to see! I received a little "courage" angel figurine... I've received "bath bombs" from a friend, which have been used regularly this week (hot baths have helped me so much when I've been in extreme pain -- and yes, the doctor did say this is ok)... a calming CD which I've been listening to when trying to find peace... wonderfully soft fuzzy pink slippers, which Kien enjoys trying to swipe from me when they're not on my feet ;) ... coffee and scones appearing at our door this morning... a friend came to paint my toenails, when I said that I haven't been able to bend over to do it and wanted pretty toes while in the hospital :) ... my MOPS group gave me a "prayer shawl" knitted and prayed over by some ladies at a local church, which was then prayed over by my MOPS group before presenting it to me (and I've carried it to some doctor's appointments both for physical warmth and emotional comfort) ...novels to read... the fabulous portrait session I just blogged about separately... and the list goes on!!!! Two boxes are still waiting by the door that I hope to open this evening. I feel so blessed and loved!!!! THANK YOU!!!!!!!
Our church already held one prayer session for me one evening at church last week, as well as others who have prayed over me. And now a group is coming over again tonight to pray over me on the night before surgery. That means the world to me!!!! My back pain has been listed in the church bulletin under prayer requests for a couple months....now that has, of course, morphed into a written prayer request for the reason behind the pain I've been having. I've also seen that my name is on the prayer chain in the weekly announcements of my childhood church. :)
The chains of people praying for me have just been amazing... Like a coworker of Steve who emailed him to say that she had received a prayer request via email from a church she used to attend...which was written by the pastor's wife, including a blog...regarding the mother of one of her students. Of course, that was me. :) So a coworker of Steve (who already knew about my cancer, of course) received a prayer request via email regarding me from one of Kien's teachers at Mother's Morning Out (where he has started attending one morning per week).
And a cool story.... A good friend of ours (who is almost like family) went to the hospital last Thursday for an exam. And when she walked into the hospital, she saw me and Steve sitting in chairs talking to a doctor. She emailed me later to tell me this story. She said it looked like I was drinking 2 bottles of lemonade. Yup!! And she didn't want to interrupt us. So she just stopped and stood there, praying for me instead of talking to us. One of the hospital volunteers approached her to ask if she needed help. So she explained to the volunteer that her friend was over there and has cancer and that she was praying for me. So the volunteer asked my name, repeated it, and said that she would pray for me as well. :) What a cool story!! I was very blessed to know that my good friend was standing there praying for me as I sat there prepping for my tests at the hospital that day.
But there's always more!!!! This past Saturday, some of the men at church met together in the morning to pray over Steve!!!! They talked together and gave Steve a chance to be able to talk through things too. And then they prayed for him. I was sooo thrilled about this!!!! And one of the preschool Daddies (who belongs to a different church) even came too to support Steve. And at that prayer session, they asked Steve how they could help in tangible ways... and now this coming weekend, a group of men is coming over to work on our yard!!!!! PRAISE GOD!!!!! Our church family has always been family to us -- but now that is being shown even more than ever!!!! We love all of you!!!!! :) I even decided to mention to them an item that is important to me which has been on Steve's "to do list" for quite some time.... and it's now being accomplished for us!!!! We had purchased a child's table and chairs for Kevin, and it is still in the box unassembled, as this is not at the top of Steve's priority list, obviously. In fact, his priorities are quite simply.... support and take care of me.... and spend lots of time researching and researching to find me the best care possible (mostly concerning now what happens post radiation and surgery). What an amazing husband I have!!!
Incidentally, I haven't directly mentioned yet that Steve is not working at all. He did go back to work last Monday morning (the Monday after we first heard the news). But after sending out an email to his whole team about my condition, his boss came to talk to him and after a good talk, he sent Steve home. They all agree that Steve does not belong at work. Praise God!!!!!!! A VP has even called to talk to Steve -- about me -- not about work. And his boss called this week to check in -- never mentioning work, except to tell Steve that he just got a raise and a generous bonus!!!! :) PRAISE GOD!!!!!!
And of course, I can't skip mentioning my mother.... She has basically taken over my job!! I don't know how we could possibly be making it through without her being here taking care of the boys. I absolutely cannot thank her enough. And of course, the boys LOVE having all this Grandma time!!!! :) And it was fun to hear this morning when Steve said that he and my mom are having trouble coping with handling my job -- two of them having trouble handling the job of one. ;) Wow, that sure makes me feel appreciated!! ha! :) And then my dad too!!! He can't stay full-time, like my mom -- but he was here throughout last week to go to all appointments with us. Now he returned this afternoon to be here for my surgery. And then he will come back again next weekend for my birthday. :)
Then.... we haven't even had to cook since this all began!!! We have had so many wonderful friends offering to bring meals!! And in the first few days, friends just brought meals over without even asking! ha!! :) That was awesome!!! And now food just keeps coming and coming!!! And the meals are all fabulous!!!! Does everyone really eat like this at home each night???? This is what I keep wondering. ;) Or do they just make something extra special when it's being brought for someone else???? ;) ha! I hope we're not the only ones who don't normally eat quite this well! Anyway, .... YUM!!!! And in the middle of typing this post (while sitting out enjoying the BEAUTIFUL weather out on our sunroom... while Kevin is at preschool, Kien is at Mother's Morning Out, and my mom is out having a morning to herself), there was a knock at the door with the delivery of tonight's dinner!! :) It was from a friend from my MOPS group - and she even included a fancy birthday cupcake for me with a candle taped to the top of the box!!!! Sooo sweet!!!! :) :)
When I started writing this post, my intent wasn't really to list out everything that everyone has done. And that is partly because I'm afraid I may have skipped something or someone!! So please don't be offended if I did!!! I just had fun writing and writing and thinking about all the love that has been shown to me. I am just overwhelmed and feel soooo supported, loved, and encouraged!!! THANK YOU for blessing our lives!!!!!!!! :) :)
I have still been keeping track of those who have said that they are praying for me. Because that is the greatest gift of all!!! God can do anything. And I know that He is helping me daily. I do not believe the expression (expression, not verse) that God will not give me more than I can handle -- because first of all, God did not give me cancer. And secondly, this is way more than I can handle -- thus creating my deep need and dependence on God. I also know that He is allowing a situation to be set up where His glory is going to be seen by literally hundreds of people as they watch my story unfold and how God will work and already has been working in my life. Anyway, I now have EIGHT PAGES of names listed in my journal -- names of people or even of whole organizations (church prayer chains, etc.) who are praying for me!!! It is incredible to see. And I imagine that there are even others that I don't know about, based on the surprising emails I receive everyday -- even from people that I do not know personally. By the way, I should add here that I apologize if you have written or called and I have not replied. I am working on a "no guilt" philosophy in life though, which is a new thing for me. ;) ha. And I keep reminding myself that my doctor specifically said that I need to keep my focus on myself right now. So although I truly do feel badly that I have not been able to reply to everyone who has contacted me, I am following the advice that has been given -- and I'm working on the "no guilt" part too. ;) But THANK YOU for everything that each of you has done for me -- including all the wonderful supportive and encouraging messages!!!!!!! They mean sooo much to me!!!! :)
I have even received sweet surprises along the way!! Flowers and plants have arrived to cheer up our home. Cards were overtaking our mantle, so my mom has now climbed up on a chair to line them across the top of the built-in shelving unit in our family room. They are a joy to see! I received a little "courage" angel figurine... I've received "bath bombs" from a friend, which have been used regularly this week (hot baths have helped me so much when I've been in extreme pain -- and yes, the doctor did say this is ok)... a calming CD which I've been listening to when trying to find peace... wonderfully soft fuzzy pink slippers, which Kien enjoys trying to swipe from me when they're not on my feet ;) ... coffee and scones appearing at our door this morning... a friend came to paint my toenails, when I said that I haven't been able to bend over to do it and wanted pretty toes while in the hospital :) ... my MOPS group gave me a "prayer shawl" knitted and prayed over by some ladies at a local church, which was then prayed over by my MOPS group before presenting it to me (and I've carried it to some doctor's appointments both for physical warmth and emotional comfort) ...novels to read... the fabulous portrait session I just blogged about separately... and the list goes on!!!! Two boxes are still waiting by the door that I hope to open this evening. I feel so blessed and loved!!!! THANK YOU!!!!!!!
Our church already held one prayer session for me one evening at church last week, as well as others who have prayed over me. And now a group is coming over again tonight to pray over me on the night before surgery. That means the world to me!!!! My back pain has been listed in the church bulletin under prayer requests for a couple months....now that has, of course, morphed into a written prayer request for the reason behind the pain I've been having. I've also seen that my name is on the prayer chain in the weekly announcements of my childhood church. :)
The chains of people praying for me have just been amazing... Like a coworker of Steve who emailed him to say that she had received a prayer request via email from a church she used to attend...which was written by the pastor's wife, including a blog...regarding the mother of one of her students. Of course, that was me. :) So a coworker of Steve (who already knew about my cancer, of course) received a prayer request via email regarding me from one of Kien's teachers at Mother's Morning Out (where he has started attending one morning per week).
And a cool story.... A good friend of ours (who is almost like family) went to the hospital last Thursday for an exam. And when she walked into the hospital, she saw me and Steve sitting in chairs talking to a doctor. She emailed me later to tell me this story. She said it looked like I was drinking 2 bottles of lemonade. Yup!! And she didn't want to interrupt us. So she just stopped and stood there, praying for me instead of talking to us. One of the hospital volunteers approached her to ask if she needed help. So she explained to the volunteer that her friend was over there and has cancer and that she was praying for me. So the volunteer asked my name, repeated it, and said that she would pray for me as well. :) What a cool story!! I was very blessed to know that my good friend was standing there praying for me as I sat there prepping for my tests at the hospital that day.
But there's always more!!!! This past Saturday, some of the men at church met together in the morning to pray over Steve!!!! They talked together and gave Steve a chance to be able to talk through things too. And then they prayed for him. I was sooo thrilled about this!!!! And one of the preschool Daddies (who belongs to a different church) even came too to support Steve. And at that prayer session, they asked Steve how they could help in tangible ways... and now this coming weekend, a group of men is coming over to work on our yard!!!!! PRAISE GOD!!!!! Our church family has always been family to us -- but now that is being shown even more than ever!!!! We love all of you!!!!! :) I even decided to mention to them an item that is important to me which has been on Steve's "to do list" for quite some time.... and it's now being accomplished for us!!!! We had purchased a child's table and chairs for Kevin, and it is still in the box unassembled, as this is not at the top of Steve's priority list, obviously. In fact, his priorities are quite simply.... support and take care of me.... and spend lots of time researching and researching to find me the best care possible (mostly concerning now what happens post radiation and surgery). What an amazing husband I have!!!
Incidentally, I haven't directly mentioned yet that Steve is not working at all. He did go back to work last Monday morning (the Monday after we first heard the news). But after sending out an email to his whole team about my condition, his boss came to talk to him and after a good talk, he sent Steve home. They all agree that Steve does not belong at work. Praise God!!!!!!! A VP has even called to talk to Steve -- about me -- not about work. And his boss called this week to check in -- never mentioning work, except to tell Steve that he just got a raise and a generous bonus!!!! :) PRAISE GOD!!!!!!
And of course, I can't skip mentioning my mother.... She has basically taken over my job!! I don't know how we could possibly be making it through without her being here taking care of the boys. I absolutely cannot thank her enough. And of course, the boys LOVE having all this Grandma time!!!! :) And it was fun to hear this morning when Steve said that he and my mom are having trouble coping with handling my job -- two of them having trouble handling the job of one. ;) Wow, that sure makes me feel appreciated!! ha! :) And then my dad too!!! He can't stay full-time, like my mom -- but he was here throughout last week to go to all appointments with us. Now he returned this afternoon to be here for my surgery. And then he will come back again next weekend for my birthday. :)
Then.... we haven't even had to cook since this all began!!! We have had so many wonderful friends offering to bring meals!! And in the first few days, friends just brought meals over without even asking! ha!! :) That was awesome!!! And now food just keeps coming and coming!!! And the meals are all fabulous!!!! Does everyone really eat like this at home each night???? This is what I keep wondering. ;) Or do they just make something extra special when it's being brought for someone else???? ;) ha! I hope we're not the only ones who don't normally eat quite this well! Anyway, .... YUM!!!! And in the middle of typing this post (while sitting out enjoying the BEAUTIFUL weather out on our sunroom... while Kevin is at preschool, Kien is at Mother's Morning Out, and my mom is out having a morning to herself), there was a knock at the door with the delivery of tonight's dinner!! :) It was from a friend from my MOPS group - and she even included a fancy birthday cupcake for me with a candle taped to the top of the box!!!! Sooo sweet!!!! :) :)
When I started writing this post, my intent wasn't really to list out everything that everyone has done. And that is partly because I'm afraid I may have skipped something or someone!! So please don't be offended if I did!!! I just had fun writing and writing and thinking about all the love that has been shown to me. I am just overwhelmed and feel soooo supported, loved, and encouraged!!! THANK YOU for blessing our lives!!!!!!!! :) :)
Photo Session
One of the fabulous gifts of love which has been given to me in the past 2 weeks was a photo session with a friend who is a professional photographer!! She offered to give us a "relationship photography" session and a disc of images as her gift to me!!! WOW!!! If you have any idea how much I value photos, you'll know how excited I was about this offer!!! In fact, just a couple days before she made the offer, I had thought that it would be so nice to get some new family portraits before I begin cancer treatments. We do know now that I won't be having chemo (it doesn't work on kidney cancer), so my chances of things like losing my hair are minimal. But in a time like this, pictures become even more important. So yesterday morning, we had the privilege of going to her studio for a photo session. He name is Anne Clay -- and she is HIGHLY recommended!!!! She took Kevin's 4-year portraits, and they are phenomenal!!!She called this session "relationship photography." She started by taking pictures of me alone. That's a bit nerve-wracking. ;) ha! Kevin even made some comment about how I don't usually have pictures taken alone. ;) Then she brought in Steve. I didn't expect to get all these wonderful photos, and it was just amazing. I thought we'd just focus on our family of 4. But she spent a lot of time doing all sorts of sweet and creative poses of me and Steve (while keeping me in a comfy chair). Steve and I haven't had pictures like this together since our wedding day. :) We have been married for 9 years. In fact, this Friday is the 10-year anniversary of the day Steve proposed to me. :) We have done something each year to celebrate our "engagiversary" -- but for our 10th, we will celebrate it in the hospital. But if we look at that in a different light, we're going to celebrate by saving my life!! That is a good thing. :) While taking pictures of the two of us, both Anne and my mom began to cry!! I guess that means the pictures are going to be pretty good. ;) I absolutely can't wait to see!!
Next, she brought Kien in to take Steve's place. Kien sat on my lap and we got some very sweet poses. We moved him around some and tried different things. Then we even got pictures of him kissing me!!!! :) In fact.... he did something new!! He held out his hands to cup them on my face while giving me big kisses!!! He did this multiple times, so I imagine she must have caught a great shot of this!!! Wow!! :) And then he even went into sweet snuggle mode, where he rested his head on my shoulder!!! I LOVE this!!!! I am soooo thrilled that she was able to capture this for us. :) Can't wait!!!!
Then she brought in Kevin, and we did pictures with me and both of my precious boys. :) Those will be very fun and sweet as well!! And then Kien got to take a break, as Kevin came up on my lap for mother / son photos. Kevin is such a ham and SUCH an excellent poser!!!! I know these pictures will be fabulous! :) We got sweet kissing ones as well. :)
Finally we took pictures of our family of 4. These got more complicated, of course. ha! But hopefully we got some great shots!! And then we took pictures of just me and my own Mommy together. :) We rarely ever even get snapshots of me and my mom together, so these will be very special to have!!!! I just want wait to see the final results!!!!!! At one point far into the session, Anne had to run aside to put in a new memory card. She had filled it up and called out that she had just used up 700 photos!!!! WHOA!!!! She's got a lot of work in store for her in going through these!!!!! ;) I cannot thank her enough for this fabulous, fabulous gift!!!! Have I mentioned how excited I am to see the results????? :) :)
By the way, my brother and his family (from TX) and my aunt (from Toronto) are all coming next weekend for my birthday!!!!!!! :) :) :) I am thrilled!!!!!! And while they're here, we have set up an appointment with Anne Clay for a full family photo session with our family of 4, my brother's family of 4, and my parents. 3 of the grandchildren are new additions within the past year, as my brother just got married a year ago, and we just adopted Kien in June. :) This will be lots of fun too! I just hope I can hold up well for the session, as I will have only been out of the hospital for a few days at this point. We are doing it the day before my birthday.
The MRI Story
So last Friday, Steve called the oncologist's office to figure out a new plan for accomplishing my MRI. We thought I was going to be completely knocked out. I'm not sure exactly what happened, but Steve was told this couldn't happen at the hospital. So then they scheduled me for elsewhere instead -- and they told Steve that I would get valium through an IV. So I wouldn't be completely knocked out afterall, but apparently I would be pretty out of it. And then they canceled the 2 MRI's from Monday and just lumped them all together for Wednesday night.
Our appointment was 5:50pm last night. After paperwork, I think it was about 6:15pm when they called me back. A nice man came out and simply said, "Karin." So I followed, and they said Steve could come back in a minute. He started to ask me a couple questions...then he got confused by my answers. Turns out that out of the 2 women waiting in the waiting room last evening for an MRI, we both had the same first name!!! Oops!!!! I was about to get the wrong MRI. ;) I'm sure it would have been caught at some point in conversation, as it did. But everyone was a bit surprised when they realized that 2 Karin / Karens were being called back at the same time -- and were the only patients there.
So then I was passed off to someone else and to the dressing room on the other side. And they said Steve could come with me! So he also had to fill out a form answering health questions, since he was going to be in the MRI room. And he also had to remove all metal objects from his body and leave them in the locker.
In this initial conversation, I learned one of the best pieces of news of the whole evening.... it was an open MRI!!!!!!!!! We had NO idea!!!!!!! :) :) :) We had really wanted to do this at the same location as last time, but they didn't have any availability. So I was scheduled for the standard closed little MRI machine, which did NOT work for me. And when I was rescheduled, no one bothered to tell us that this was an OPEN one!!!! :) :) :) They said it's only slightly smaller than the one I had been in before (there's something about the other one where they claim that it's the only such-and-such in the whole area -- but apparently this one is almost just as good). I decided though that I better stick with the valium idea, as this was a big deal and perhaps was going to be long. They said they needed to do an IV anyway, due to the contrast that needed to be given to me partway through the test. (The place on Friday was not going to use an IV. They were simply going to give me an injection partway through the test and I was not to move!! HUH???? No way.)
So they had me lie down, preparing to enter the machine head-first this time. And they got ready to do the IV. I wasn't nearly as worried about it this time, because I had focused my worry on the MRI itself. ;) But Steve held my hand and helped keep me calm -- and I did it!!!! I accomplished my second IV ever. :) I've actually lost track of how many times I've been stuck in the past 2 weeks. But again, I gave them very clear instructions to NOT say a word to me about what they're doing!! And they obeyed. :)
The main technician was a man, and then there was a woman who was helping (a nurse?). They were both very nice and a huge blessing. They were very patient with me and were just great (unlike the people on Friday who were like 20 years old and just clueless when I freaked out). So they got me set up and asked if I wanted a cloth over my eyes. This has been offered multiple times now in various tests, and I have always declined. But this time, I did wonder if I should take it. My concern was that it might make me feel claustrophobic. But she said I could always choose to remove it. So I let her put it on...and after a minute, I decided I wanted it off. So I pulled it off (before I was in the machine), and then I panicked!!! I had no idea that she had already attached a cage around my head!!!!! OH MY WORD!!!! So I flipped and asked them to take it off!!! I needed to calm down before anything else was done and asked them for the valium. I had made a passing comment when we entered that perhaps I wouldn't need the valium since it was an open MRI...but then had decided I should have it anyway, but I guess I wasn't clear to them. Anyway, they got the doctor to come administer the valium. Whew!!! Then the cloth went back on -- and believe me, I kept it there!!!!! I felt more relaxed and it was time to go in. I don't know what time this all began, but I'd guess it was around 6:30pm.
They were starting by taking pictures of my head. Another way that they were just great... the technician spoke to me all the time!!! He could talk to me, and he could hear me when I talked in there. So he was always telling me, "This next test will take about 2 minutes." Each time, he gave me the length of the next test!!!! That was soooo awesome!!!!! I think the longest one ever was 5 minutes. There were some that were 4 minutes. But often they were only 1 or 2 minutes - and once in awhile, they were 20 seconds. And so it was clear to me that when the machine made noise, that's when something was happening. When it was silent, we were in between tests. That was not clear during my previous MRI. During my first MRI 2 weeks ago, the guy didn't communicate with me at all until the very end. That one was to last 25 minutes, but Steve said it was about 45 minutes in the end. But I also had no cloth on my face, no cage over my head, I went in feet first, my head was out of the machine 50% of the time, and I had no IV.
After a little while, my mouth really started feeling dry. This has been happening to me in other long tests too when I have to lie still for so long. So since he was communicating with me and could hear me, during one of the little breaks, I told him my mouth was really dry. So he said the lady would try to bring me a drink. She put a straw in a cup of water and tried to reach it into the machine to my mouth. But I was lying down and blind and it dribbled on me. This kinda freaked me out and started to make me claustrophobic. So I asked them to please pull me out. I don't remember all the details now, but I think that they pulled off the head cage and the cloth, but they wanted me to lie still. I asked if I could sit up to drink, but they didn't want me to, as that would mess up my positioning. So Steve held the drink and tried to get me to drink out of the straw. But as we talked, I guess I was getting panicky. And I really needed to use the bathroom...so.... we gave up on the idea of me not moving. So Steve held my arm ask I walked to the bathroom, and he rolled along my pole attached to my IV. Yikes. I've definitely never had that before and tried very hard to ignore it.
When I came back, I needed more valium to be able to continue. So the doctor came back...and then we were ready to go again. It went well for awhile, but I don't remember what exactly happened this time. I think it was during this timeframe that they told Steve he could speak to me. So I heard his voice telling me that I was ok and doing great. However, it was muffled. I knew he was very near me, but his voice was very muffled - and it made me feel like I was stuffed in a box. This was not good. I had earphones on my head to help block out the sound of the machine. And hooray! They did also give me music, like last time!!! :) But this past Friday, they were NOT going to give me music - and they were only giving me ear plugs. The music is a BIG help. So again, I don't remember what happened this time....but I started to panic. And I hit the panic button in my left hand. My left hand held a ball to squeeze if I needed them to shoot me out of there. And my right arm contained the IV and a little pulse thing on my finger. Again, they pulled me out of the machine. They were very encouraging and were not upset with me. They said I was doing great and more than halfway done!! (In the end though, I'm not sure that I was truly halfway done timewise at this point. They may have miscalculated on that. But it had probably been at least at an hour at that point.) I was getting quite panicky and said I really just wanted to cry. I knew that crying on my husband's shoulder was exactly what I needed -- to just let it all out. But I also knew that crying was not going to help me hold still and remain composed. So they tried to discourage me from it as well. But again... I needed to use the restroom. They asked if I could wait another half hour. But I knew I couldn't make it. (Isn't it great sharing all these personal things on the web??? ;) But with the strong pain meds I've been taking, let's just say it's been causing issues...plus I've been drinking tons of water....so yes, I definitely needed yet another break.) They forewarned me that each time I move, they will have to redo some stuff. They were ok with that and were very nice. And I knew that I would rather redo some tests than lie in there without movement for that long length of time. So out we went again...with Steve pulling the pole behind us to the bathroom.
By the way, I haven't said this directly yet, but.... that valium was not truly helping me. I did feel it relax me somewhat the first couple times. But I thought I was going to be pretty out of it. That was totally NOT the case!! So I was surprised that when I got up both times, I was pretty woozy and definitely needed Steve's arm for support in walking -- and the nurse said so too. That I should not be walking on my own for awhile. So after this 2nd break, I asked if I could have valium again, as I was increasingly getting freaked out. The technician was very nice, but he told me that the doctor said I could only have 2 more doses. I said that I did want one. I didn't know if I could really go back in there again without it. So the doctor came back and gave me my 3rd dose.
The technician explained what we had left to do. He needed to finish the one section of my spine, then it would be time to give me the contrast through the IV. He wanted to do that same section of my spine next with the contrast, as it would be easier to stay in the same spot. Then he would do my head next with the contrast. I had asked if he could remove the head cage when he was done with it. It would only be after that when he would be done with it. He said he could do that, but then there wouldn't be much left afterwards. Just the remaining part of my spine (I don't remember the terms....but the lowest section of my spine was done in my original MRI...so the 2 next sections were done both in this one session, plus then also my head, making 3 separate MRI sections done in one session). So anyway, he said he could remove the cage, but it would only be for about the final 10 minutes of my whole MRI.
So I went back in....with the hope that I was almost done. He seemed to think that the rest of the it would take about 30 minutes. But both Steve and I think it did take longer than that. I guess things can take longer than they originally anticipate? Anyway, this ended up being the best part of the whole MRI. I was finally able to truly get peaceful. Oh! And at some point shortly before this, I was then told that the doctor said I could have no more valium. Turns out he only wanted me to have 3 doses, due to the strong pain meds that I'm already on. He said it would be too dangerous to give me anything else. Of course, I was very disappointed -- but I'm glad they are concerned about my health and safety.
So.... I had tried so many different head games in that machine to pass the time and remain calm. I feel far to silly to say what eventually really really worked for me. It wasn't any of the obvious stuff. It wasn't even what had kept me calm during my first MRI. The head cage was a new hurdle to overcome mentally. So I finally was able to come up with a detailed mental game which incorporated a "good excuse" for the very loud terrible noises that the machine would make...and I kept my mind focused on my game and building upon it throughout the rest of the MRI. Well, I'll just say it....even though I feel silly. It just involved pretending that when I'd hear the noise and the bed would sometimes even move due to the noises, I'd pretend that I was in one of those big massage chairs at a nail salon. So instead of the noises and movements being scary, they were working on relaxing my back. And since Steve had one of his hands on my foot, I pretended that I was having my nails done. But that was too simple to occupy my mind... so it had to become this elaborate nail painting thing, where I was envisioning exactly what they were painting on my nails and that it was all for my birthday celebration. Anyway... as silly as it was, it was the one thing that I could truly put my mind into that seemed relaxing and believable (due to circumstances of the bed and Steve's hand on my foot) -- and all that matters is... IT WORKED!!!
I hate to even admit that just praying did not help me....because it made my mind think about what was happening. I needed to fully escape and rely on the prayers of others instead. And I did it!!!!! Steve was also able to keep his hands on my leg and foot during this last phase. He was originally rubbing my leg and I called out for him to stop. That was going to drive me bonkers, so I'm really glad he got the message and that he did not speak to me -- speaking would have make me lose it too. But his gentle touch on me was a lifesaver. And I made it through!!!!! I DID IT!!!!!! Steve thinks this session was closer to an hour than 30 minuets. I'm not sure, of course. And when I came out and looked up, no one had spoken yet. So I asked trepidatiously, "Am I done?" And the answer was YES!!!!!!! The technician told me that I was doing so well that he didn't want to pull me out to take off the cage afterall. So no, he didn't keep his word. ;) But I am thankful. He did the right thing. I made it, and we were DONE!!!!!!! We finished at exactly 9pm. WOW. What an evening. I am sure that surgery will be easier than this!!!! ;) (Ok, recovery won't be so great... But surgery itself will be far easier on me personally than this ordeal!!!!)
The nurse actually handed me a handful of Hershey Kisses as we left. ha! And then we headed out in search of a drive-thru to get a drink. All we could find was a Dunkin Donuts, so we got a drink and a donut. ;) And I wasn't even able to talk about the experience or even tell Steve what I had done to get through it until we were almost home (45 minutes later). It was a horrendous ordeal, but it is DONE!!!! Praise God for seeing me through!!!!!!!! :) :)
Of course, I am not blind to the fact that I may need to do this again someday. I'm sure that testing will continue to be done over time to see how I'm doing. I don't know if MRI's will be needed. I have heard that CT scans will (but those were pretty easy - relatively speaking!). But if I ever have to do this again, I know what I want. I want an open MRI. I want my wonderful husband there by my side. And I do NOT ever want to do all 3 areas in one MRI session. The head session needs to be done separately, so that I have the cage on for as little time as possible. And I suppose that the valium must have been helpful....so I guess I would do it again. But wow, it was FAR from what was expected!!!! But for now, I will not worry about it in the least and just rejoice that this part is over. :) Sigh of relief.
Thank you so much for the prayers!!!!!
Our appointment was 5:50pm last night. After paperwork, I think it was about 6:15pm when they called me back. A nice man came out and simply said, "Karin." So I followed, and they said Steve could come back in a minute. He started to ask me a couple questions...then he got confused by my answers. Turns out that out of the 2 women waiting in the waiting room last evening for an MRI, we both had the same first name!!! Oops!!!! I was about to get the wrong MRI. ;) I'm sure it would have been caught at some point in conversation, as it did. But everyone was a bit surprised when they realized that 2 Karin / Karens were being called back at the same time -- and were the only patients there.
So then I was passed off to someone else and to the dressing room on the other side. And they said Steve could come with me! So he also had to fill out a form answering health questions, since he was going to be in the MRI room. And he also had to remove all metal objects from his body and leave them in the locker.
In this initial conversation, I learned one of the best pieces of news of the whole evening.... it was an open MRI!!!!!!!!! We had NO idea!!!!!!! :) :) :) We had really wanted to do this at the same location as last time, but they didn't have any availability. So I was scheduled for the standard closed little MRI machine, which did NOT work for me. And when I was rescheduled, no one bothered to tell us that this was an OPEN one!!!! :) :) :) They said it's only slightly smaller than the one I had been in before (there's something about the other one where they claim that it's the only such-and-such in the whole area -- but apparently this one is almost just as good). I decided though that I better stick with the valium idea, as this was a big deal and perhaps was going to be long. They said they needed to do an IV anyway, due to the contrast that needed to be given to me partway through the test. (The place on Friday was not going to use an IV. They were simply going to give me an injection partway through the test and I was not to move!! HUH???? No way.)
So they had me lie down, preparing to enter the machine head-first this time. And they got ready to do the IV. I wasn't nearly as worried about it this time, because I had focused my worry on the MRI itself. ;) But Steve held my hand and helped keep me calm -- and I did it!!!! I accomplished my second IV ever. :) I've actually lost track of how many times I've been stuck in the past 2 weeks. But again, I gave them very clear instructions to NOT say a word to me about what they're doing!! And they obeyed. :)
The main technician was a man, and then there was a woman who was helping (a nurse?). They were both very nice and a huge blessing. They were very patient with me and were just great (unlike the people on Friday who were like 20 years old and just clueless when I freaked out). So they got me set up and asked if I wanted a cloth over my eyes. This has been offered multiple times now in various tests, and I have always declined. But this time, I did wonder if I should take it. My concern was that it might make me feel claustrophobic. But she said I could always choose to remove it. So I let her put it on...and after a minute, I decided I wanted it off. So I pulled it off (before I was in the machine), and then I panicked!!! I had no idea that she had already attached a cage around my head!!!!! OH MY WORD!!!! So I flipped and asked them to take it off!!! I needed to calm down before anything else was done and asked them for the valium. I had made a passing comment when we entered that perhaps I wouldn't need the valium since it was an open MRI...but then had decided I should have it anyway, but I guess I wasn't clear to them. Anyway, they got the doctor to come administer the valium. Whew!!! Then the cloth went back on -- and believe me, I kept it there!!!!! I felt more relaxed and it was time to go in. I don't know what time this all began, but I'd guess it was around 6:30pm.
They were starting by taking pictures of my head. Another way that they were just great... the technician spoke to me all the time!!! He could talk to me, and he could hear me when I talked in there. So he was always telling me, "This next test will take about 2 minutes." Each time, he gave me the length of the next test!!!! That was soooo awesome!!!!! I think the longest one ever was 5 minutes. There were some that were 4 minutes. But often they were only 1 or 2 minutes - and once in awhile, they were 20 seconds. And so it was clear to me that when the machine made noise, that's when something was happening. When it was silent, we were in between tests. That was not clear during my previous MRI. During my first MRI 2 weeks ago, the guy didn't communicate with me at all until the very end. That one was to last 25 minutes, but Steve said it was about 45 minutes in the end. But I also had no cloth on my face, no cage over my head, I went in feet first, my head was out of the machine 50% of the time, and I had no IV.
After a little while, my mouth really started feeling dry. This has been happening to me in other long tests too when I have to lie still for so long. So since he was communicating with me and could hear me, during one of the little breaks, I told him my mouth was really dry. So he said the lady would try to bring me a drink. She put a straw in a cup of water and tried to reach it into the machine to my mouth. But I was lying down and blind and it dribbled on me. This kinda freaked me out and started to make me claustrophobic. So I asked them to please pull me out. I don't remember all the details now, but I think that they pulled off the head cage and the cloth, but they wanted me to lie still. I asked if I could sit up to drink, but they didn't want me to, as that would mess up my positioning. So Steve held the drink and tried to get me to drink out of the straw. But as we talked, I guess I was getting panicky. And I really needed to use the bathroom...so.... we gave up on the idea of me not moving. So Steve held my arm ask I walked to the bathroom, and he rolled along my pole attached to my IV. Yikes. I've definitely never had that before and tried very hard to ignore it.
When I came back, I needed more valium to be able to continue. So the doctor came back...and then we were ready to go again. It went well for awhile, but I don't remember what exactly happened this time. I think it was during this timeframe that they told Steve he could speak to me. So I heard his voice telling me that I was ok and doing great. However, it was muffled. I knew he was very near me, but his voice was very muffled - and it made me feel like I was stuffed in a box. This was not good. I had earphones on my head to help block out the sound of the machine. And hooray! They did also give me music, like last time!!! :) But this past Friday, they were NOT going to give me music - and they were only giving me ear plugs. The music is a BIG help. So again, I don't remember what happened this time....but I started to panic. And I hit the panic button in my left hand. My left hand held a ball to squeeze if I needed them to shoot me out of there. And my right arm contained the IV and a little pulse thing on my finger. Again, they pulled me out of the machine. They were very encouraging and were not upset with me. They said I was doing great and more than halfway done!! (In the end though, I'm not sure that I was truly halfway done timewise at this point. They may have miscalculated on that. But it had probably been at least at an hour at that point.) I was getting quite panicky and said I really just wanted to cry. I knew that crying on my husband's shoulder was exactly what I needed -- to just let it all out. But I also knew that crying was not going to help me hold still and remain composed. So they tried to discourage me from it as well. But again... I needed to use the restroom. They asked if I could wait another half hour. But I knew I couldn't make it. (Isn't it great sharing all these personal things on the web??? ;) But with the strong pain meds I've been taking, let's just say it's been causing issues...plus I've been drinking tons of water....so yes, I definitely needed yet another break.) They forewarned me that each time I move, they will have to redo some stuff. They were ok with that and were very nice. And I knew that I would rather redo some tests than lie in there without movement for that long length of time. So out we went again...with Steve pulling the pole behind us to the bathroom.
By the way, I haven't said this directly yet, but.... that valium was not truly helping me. I did feel it relax me somewhat the first couple times. But I thought I was going to be pretty out of it. That was totally NOT the case!! So I was surprised that when I got up both times, I was pretty woozy and definitely needed Steve's arm for support in walking -- and the nurse said so too. That I should not be walking on my own for awhile. So after this 2nd break, I asked if I could have valium again, as I was increasingly getting freaked out. The technician was very nice, but he told me that the doctor said I could only have 2 more doses. I said that I did want one. I didn't know if I could really go back in there again without it. So the doctor came back and gave me my 3rd dose.
The technician explained what we had left to do. He needed to finish the one section of my spine, then it would be time to give me the contrast through the IV. He wanted to do that same section of my spine next with the contrast, as it would be easier to stay in the same spot. Then he would do my head next with the contrast. I had asked if he could remove the head cage when he was done with it. It would only be after that when he would be done with it. He said he could do that, but then there wouldn't be much left afterwards. Just the remaining part of my spine (I don't remember the terms....but the lowest section of my spine was done in my original MRI...so the 2 next sections were done both in this one session, plus then also my head, making 3 separate MRI sections done in one session). So anyway, he said he could remove the cage, but it would only be for about the final 10 minutes of my whole MRI.
So I went back in....with the hope that I was almost done. He seemed to think that the rest of the it would take about 30 minutes. But both Steve and I think it did take longer than that. I guess things can take longer than they originally anticipate? Anyway, this ended up being the best part of the whole MRI. I was finally able to truly get peaceful. Oh! And at some point shortly before this, I was then told that the doctor said I could have no more valium. Turns out he only wanted me to have 3 doses, due to the strong pain meds that I'm already on. He said it would be too dangerous to give me anything else. Of course, I was very disappointed -- but I'm glad they are concerned about my health and safety.
So.... I had tried so many different head games in that machine to pass the time and remain calm. I feel far to silly to say what eventually really really worked for me. It wasn't any of the obvious stuff. It wasn't even what had kept me calm during my first MRI. The head cage was a new hurdle to overcome mentally. So I finally was able to come up with a detailed mental game which incorporated a "good excuse" for the very loud terrible noises that the machine would make...and I kept my mind focused on my game and building upon it throughout the rest of the MRI. Well, I'll just say it....even though I feel silly. It just involved pretending that when I'd hear the noise and the bed would sometimes even move due to the noises, I'd pretend that I was in one of those big massage chairs at a nail salon. So instead of the noises and movements being scary, they were working on relaxing my back. And since Steve had one of his hands on my foot, I pretended that I was having my nails done. But that was too simple to occupy my mind... so it had to become this elaborate nail painting thing, where I was envisioning exactly what they were painting on my nails and that it was all for my birthday celebration. Anyway... as silly as it was, it was the one thing that I could truly put my mind into that seemed relaxing and believable (due to circumstances of the bed and Steve's hand on my foot) -- and all that matters is... IT WORKED!!!
I hate to even admit that just praying did not help me....because it made my mind think about what was happening. I needed to fully escape and rely on the prayers of others instead. And I did it!!!!! Steve was also able to keep his hands on my leg and foot during this last phase. He was originally rubbing my leg and I called out for him to stop. That was going to drive me bonkers, so I'm really glad he got the message and that he did not speak to me -- speaking would have make me lose it too. But his gentle touch on me was a lifesaver. And I made it through!!!!! I DID IT!!!!!! Steve thinks this session was closer to an hour than 30 minuets. I'm not sure, of course. And when I came out and looked up, no one had spoken yet. So I asked trepidatiously, "Am I done?" And the answer was YES!!!!!!! The technician told me that I was doing so well that he didn't want to pull me out to take off the cage afterall. So no, he didn't keep his word. ;) But I am thankful. He did the right thing. I made it, and we were DONE!!!!!!! We finished at exactly 9pm. WOW. What an evening. I am sure that surgery will be easier than this!!!! ;) (Ok, recovery won't be so great... But surgery itself will be far easier on me personally than this ordeal!!!!)
The nurse actually handed me a handful of Hershey Kisses as we left. ha! And then we headed out in search of a drive-thru to get a drink. All we could find was a Dunkin Donuts, so we got a drink and a donut. ;) And I wasn't even able to talk about the experience or even tell Steve what I had done to get through it until we were almost home (45 minutes later). It was a horrendous ordeal, but it is DONE!!!! Praise God for seeing me through!!!!!!!! :) :)
Of course, I am not blind to the fact that I may need to do this again someday. I'm sure that testing will continue to be done over time to see how I'm doing. I don't know if MRI's will be needed. I have heard that CT scans will (but those were pretty easy - relatively speaking!). But if I ever have to do this again, I know what I want. I want an open MRI. I want my wonderful husband there by my side. And I do NOT ever want to do all 3 areas in one MRI session. The head session needs to be done separately, so that I have the cage on for as little time as possible. And I suppose that the valium must have been helpful....so I guess I would do it again. But wow, it was FAR from what was expected!!!! But for now, I will not worry about it in the least and just rejoice that this part is over. :) Sigh of relief.
Thank you so much for the prayers!!!!!
Wednesday, September 17, 2008
The MRI...Can't Even Talk About it Yet
Well, I did it. I survived my triple MRI. It lasted for 2.5 hours. Yes, you read that right. 2.5 hours. And yes, I did hit the panic button a couple times. I have so much more to say on this subject, but I just can't do it right now from an exhaustion and emotional standpoint. Steve was with me for the whole thing, but I wasn't even able to talk about it in the car on the way home for the first 45 minutes. Then I wasn't able to tell my mom much of anything for awhile either after getting home. I took a bath, took my pain pills, and have been working on relaxing and getting out of pain. I'm finally pain-free, and I think I need to go to bed. Steve has already fallen asleep on the couch. So I will write more tomorrow. There were some blessings along the way - including the fact that I actually accomplished the task!! Praise God!!! But overall, it was quite a nightmare. And literally, I am afraid that I may have nightmares tonight. Oh boy.
Tomorrow will bring another radiation appointment, along with an appointment with the radiation oncologist to discuss the MRI's. I'm also to do some "surgery prep" things at home. And my dad arrives in the afternoon! Then some wonderful church friends plan to pray over me in the evening again....and Friday is surgery day. But certainly, surgery itself must be better than this experience tonight!! So onward and upward.... I'll write more tomorrow. :)
Thanks sooooo much for the prayers!!!!!!
Unfortunately, I had to miss the first night of my new small group tonight. Ironically, I thought we'd be getting home shortly after they started - so by the time they'd think to pray for the MRI specifically, it would be over. Little did any of us know that I was probably in that machine throughout their entire meeting tonight!! Boy, oh, boy. Anyway, thank you all soooo much for the prayers!!!!! I look forward to some relaxing tomorrow -- I hope! And getting some last-minute things done.
Tomorrow will bring another radiation appointment, along with an appointment with the radiation oncologist to discuss the MRI's. I'm also to do some "surgery prep" things at home. And my dad arrives in the afternoon! Then some wonderful church friends plan to pray over me in the evening again....and Friday is surgery day. But certainly, surgery itself must be better than this experience tonight!! So onward and upward.... I'll write more tomorrow. :)
Thanks sooooo much for the prayers!!!!!!
Unfortunately, I had to miss the first night of my new small group tonight. Ironically, I thought we'd be getting home shortly after they started - so by the time they'd think to pray for the MRI specifically, it would be over. Little did any of us know that I was probably in that machine throughout their entire meeting tonight!! Boy, oh, boy. Anyway, thank you all soooo much for the prayers!!!!! I look forward to some relaxing tomorrow -- I hope! And getting some last-minute things done.
We Goofed
My general physician told us on Sept. 5 that people often start forgetting appointments with all that starts happening, so I've really tried to stay on the ball. Steve too! He's done a wonderful job of taking care of me and promised that he would be with me at all my appointments. :) (That was something that he promised on his own -- not something that I specifically asked.)
So anyway, there's obviously been a lot going on, and it's already getting hard to juggle all the info. So... I took a nap today...and my mom and Steve forgot to wake me up! Fortunately, I did wake up, but then had only about 10 minutes to eat lunch and get to my radiation appointment, so we were a little late. Oops! So that was a bit frazzling. I was due for both pain meds at that point, so Steve quickly gave me my 8-hour one before we left home. After we got home, I was really hurting from lying on that hard surface for radiation. I also had gotten a stomach ache after the speed lunch and then lying down...so I was a bit of a cranky mess. So in our weird groggy state, I took the 4-hour pain med too when we arrived home. I'm so paranoid about medicine that I always double or triple check with Steve before taking anything -- even when he's giving it to me! ;) ha. And we always write it all down too. And it was, in fact, time to take it. So anyway....an hour after taking it, I was reading through my little notebook where we keep track of everything. And I saw that we wrote on Friday that I'm not supposed to take the 4-hour pain meds before the MRI today!!!!!!! ARRRGGGHHHH!!!!! OH NO!!!! I took it 3 hours before the MRI appt!!! Steve called the radiology place to talk to them about it, and they said they'd pass the message on to the doctor. But they said it's ok, and they may just adjust the level of valium. It's always possible that they may not, but we don't know yet. Well, that scares me to death!!!! I NEED that valium!!!!!!! So please please pray that I make it through this thing!!!!! My MRI on Friday was to last for 30 minutes total. Then I was to have 2 more on Monday, and I'm not sure how long they were to last. But all 3 are being done tonight. That could really be a long time in that machine, and I really wanted to be knocked out completely, although I won't be completely knocked out with valium anyway. I need lots of prayers to make it through this.....
THANK YOU!!!!!!!
So anyway, there's obviously been a lot going on, and it's already getting hard to juggle all the info. So... I took a nap today...and my mom and Steve forgot to wake me up! Fortunately, I did wake up, but then had only about 10 minutes to eat lunch and get to my radiation appointment, so we were a little late. Oops! So that was a bit frazzling. I was due for both pain meds at that point, so Steve quickly gave me my 8-hour one before we left home. After we got home, I was really hurting from lying on that hard surface for radiation. I also had gotten a stomach ache after the speed lunch and then lying down...so I was a bit of a cranky mess. So in our weird groggy state, I took the 4-hour pain med too when we arrived home. I'm so paranoid about medicine that I always double or triple check with Steve before taking anything -- even when he's giving it to me! ;) ha. And we always write it all down too. And it was, in fact, time to take it. So anyway....an hour after taking it, I was reading through my little notebook where we keep track of everything. And I saw that we wrote on Friday that I'm not supposed to take the 4-hour pain meds before the MRI today!!!!!!! ARRRGGGHHHH!!!!! OH NO!!!! I took it 3 hours before the MRI appt!!! Steve called the radiology place to talk to them about it, and they said they'd pass the message on to the doctor. But they said it's ok, and they may just adjust the level of valium. It's always possible that they may not, but we don't know yet. Well, that scares me to death!!!! I NEED that valium!!!!!!! So please please pray that I make it through this thing!!!!! My MRI on Friday was to last for 30 minutes total. Then I was to have 2 more on Monday, and I'm not sure how long they were to last. But all 3 are being done tonight. That could really be a long time in that machine, and I really wanted to be knocked out completely, although I won't be completely knocked out with valium anyway. I need lots of prayers to make it through this.....
THANK YOU!!!!!!!
Tuesday, September 16, 2008
Pre-Op Appointment
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.
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.
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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