Sorry I haven't been better at keeping up with updates the last couple of weeks. Life is crazy right now. Pete is taking his bar exam this week, and is staying at the hotel so he's just right next door to the testing site.
Mom is in San Antonio right now. Dad needed to work this week actually in the building, rather than on the road. So Granny and PawPaw took her down to San Antonio. She is starting on week 1, just about 3-4 weeks behind everyone else in the trial.
Her first treatment was this morning. Mom called Dad tonight and said that she was feeling really sick to her stomach. That's a pretty normal side effect of ANY chemo, as so many people are able to tell us. It just always seems to hit her SO quickly. I really don't remember if they are coming back tomorrow or Thursday. For some reason I think the doctors needed to check her tomorrow. I do know that they tentatively reserved the hotel room for the whole week, just in case she was feeling too sick to travel.
We are really praying that this works. Everyone is so exhausted, especially Mom. All the back and forth and being sick, well, it's really taking a toll on her.
I'll update again soon. Honestly, though, it will probably be after Thursday. We are just trying to get through this week!
Tuesday, July 28, 2009
Tuesday, July 21, 2009
San Antonio Bound...Part 2
OK. Mom got a phone call last week from CTRC wanting her to come back down for more testing. So after enduring IV's on Thursday and Friday all day, plus on Monday (not to mention some ill-advised steak fingers with french fries from DQ) she headed back down to SA this week with Dad.
Thankfully, SA went well this time. They have done all of her tests, and she's back in the study as of next Tuesday (7/28)!! Now, I don't know if this means that she'll just start here, about 4 weeks late, or if she's starting from the beginning, and will be 4 weeks behind everyone else. I will let everyone know, however, as soon as I know.
So we appear to be on the upswing of the roller coaster. You know, the part where the train clicks into the chain that pulls you upward? Clickety clack, all the way up. We just don't know if we are headed for a plateau or the downswing again.
Pray for Mom as she starts this trial. I know she's excited, but scared too. One of the major side effects of this drug is anorexia, and if there's anything we DON'T need right now, it's anorexia.
Selfishly, I'm going to ask for a lot of prayers for us right now. Besides dealing with all this stuff with Mom, Pete and I have been dealing with a lot. He's taking the bar exam next week, and currently no one seems to want to hire a new attorney who has little experience. He's studying about 15 hours a day right now. We just found out some of our very closest friends are moving 3 weeks after the bar exam - to Nashville!! It has to do with a family situation for her. Also, there is another situation that we are choosing to keep kinda quiet about (no baby, no divorce, no moving, no health issues for either of us) but needs a lot of prayer for us to make the right decision. I'll go into more explanation later, but until the situation is resolved, I really can't. Please just pray that we make the right decision and that God will give us peace. For those of you who do know, please don't say too much. Like I said, we're keeping quiet about it, but we definitely need prayer.
Thankfully, SA went well this time. They have done all of her tests, and she's back in the study as of next Tuesday (7/28)!! Now, I don't know if this means that she'll just start here, about 4 weeks late, or if she's starting from the beginning, and will be 4 weeks behind everyone else. I will let everyone know, however, as soon as I know.
So we appear to be on the upswing of the roller coaster. You know, the part where the train clicks into the chain that pulls you upward? Clickety clack, all the way up. We just don't know if we are headed for a plateau or the downswing again.
Pray for Mom as she starts this trial. I know she's excited, but scared too. One of the major side effects of this drug is anorexia, and if there's anything we DON'T need right now, it's anorexia.
Selfishly, I'm going to ask for a lot of prayers for us right now. Besides dealing with all this stuff with Mom, Pete and I have been dealing with a lot. He's taking the bar exam next week, and currently no one seems to want to hire a new attorney who has little experience. He's studying about 15 hours a day right now. We just found out some of our very closest friends are moving 3 weeks after the bar exam - to Nashville!! It has to do with a family situation for her. Also, there is another situation that we are choosing to keep kinda quiet about (no baby, no divorce, no moving, no health issues for either of us) but needs a lot of prayer for us to make the right decision. I'll go into more explanation later, but until the situation is resolved, I really can't. Please just pray that we make the right decision and that God will give us peace. For those of you who do know, please don't say too much. Like I said, we're keeping quiet about it, but we definitely need prayer.
Wednesday, July 15, 2009
Living in Limbo
Limbo was one of my favorite games as a kid. I especially loved it at the roller rink, I could bend WAYYYYYY back, I was a flexible little kid. Thank goodness I loved it then, becuase not only am I no longer flexible enough to play it, I currently feel like we live in limbo. And quite frankly, I'm sick of it.
Mom went to the oncologist today for a check, and to talk to him about any new options they might have.
Just as she was walking out the door to go to her appointment, CTRC from San Antonio called. They would like to re-evaluate her to possibly start in the same trial!
Mom talked to her oncologist about it, he's all for it. He wants her to come in for IV's for the rest of the week, and possibly on Monday. It looks like they will be heading to San Antonio on Monday afternoon, so Dr Ruxer wants her in that morning to top off her fluids, especially since she will have just come off the weeknd, and will be making a 5 hour car trip.
They have decided to re-evaluate her pain medicines. A few weeks ago, they weaned her off of the pills, and left her on the patches. She says that her pain has been pretty bad since then, getting worse at night. Sometimes she can't sleep. So today he re-instated the pills, and added another one, I think to alternate.
Mom's doing OK. Every time I talk to her, she is in a lot of pain, sometimes to where she can't talk. We have better days and worse days. Saturday was a really good day, I mean REALLY GOOD. We got our hair cut, she wanted Pei Wei for lunch (she actually told me she was hungry - and ATE!!!), we got pedicures and she got her nails done. She was pretty wiped out by that point, but we had been going since 8:30 that morning, and it was about 3:45 by the time we left the nail salon, and she hasn't had the energy to do all that in months. Sunday, well, not as good. I don't know if she overdid it on Saturday because she felt so good, or if it just wasn't as good of a day.
Tonight I went over to see her after working out, because her friends had a surprise for her. They bought her a recliner!! She was just completely overwhelmed. It is really nice and comfy, and pretty neutral so it goes with their house well. Mom is hoping to sleep in it, since she is more comfortable sleeping propped up, but keeps sliding off the pillows, which makes the pain get worse. In fact, as I type this she is probably sleeping in it now!!
Mom has some really great friends. Some of them she's known since high school. A few she knew when I was in elementary school, but they all went to church together for years at ROBC, and they were the group that ran around together. They have stuck together through divorces, marriages, you name it. I'm really glad that she has such good friends. They are a terrific support system for her, and for all of us. They really let us just lean on them when we need to.
This is the same group of friends who held the prayer service for Mom on Sunday night. It went well, it was just very emotional. We really appreciated it. I think Mom cried the whole way through, I know I cried for most of it. Mom cries a lot lately. I know she's wearing thin with the whole thing.
I'm tired of the whole back and forth thing. I know the rest of the family is too. I completely understand why she got turned down for the treatments last week, especially since she'd been in the hospital for the same thing 2 times in 8 days. And I'm glad they want to re-evaluate her. I just know they are really tired of making that drive, just to be told, sorry, you don't qualify. At this point, I want it to be either yes, or no. That way, if it is a no, we can start looking for something else and stop re-hashing the whole thing.
I'm really tired tonight, so I think this post is kinda all over the place, sorry about that. Please continue to pray for us.
Mom went to the oncologist today for a check, and to talk to him about any new options they might have.
Just as she was walking out the door to go to her appointment, CTRC from San Antonio called. They would like to re-evaluate her to possibly start in the same trial!
Mom talked to her oncologist about it, he's all for it. He wants her to come in for IV's for the rest of the week, and possibly on Monday. It looks like they will be heading to San Antonio on Monday afternoon, so Dr Ruxer wants her in that morning to top off her fluids, especially since she will have just come off the weeknd, and will be making a 5 hour car trip.
They have decided to re-evaluate her pain medicines. A few weeks ago, they weaned her off of the pills, and left her on the patches. She says that her pain has been pretty bad since then, getting worse at night. Sometimes she can't sleep. So today he re-instated the pills, and added another one, I think to alternate.
Mom's doing OK. Every time I talk to her, she is in a lot of pain, sometimes to where she can't talk. We have better days and worse days. Saturday was a really good day, I mean REALLY GOOD. We got our hair cut, she wanted Pei Wei for lunch (she actually told me she was hungry - and ATE!!!), we got pedicures and she got her nails done. She was pretty wiped out by that point, but we had been going since 8:30 that morning, and it was about 3:45 by the time we left the nail salon, and she hasn't had the energy to do all that in months. Sunday, well, not as good. I don't know if she overdid it on Saturday because she felt so good, or if it just wasn't as good of a day.
Tonight I went over to see her after working out, because her friends had a surprise for her. They bought her a recliner!! She was just completely overwhelmed. It is really nice and comfy, and pretty neutral so it goes with their house well. Mom is hoping to sleep in it, since she is more comfortable sleeping propped up, but keeps sliding off the pillows, which makes the pain get worse. In fact, as I type this she is probably sleeping in it now!!
Mom has some really great friends. Some of them she's known since high school. A few she knew when I was in elementary school, but they all went to church together for years at ROBC, and they were the group that ran around together. They have stuck together through divorces, marriages, you name it. I'm really glad that she has such good friends. They are a terrific support system for her, and for all of us. They really let us just lean on them when we need to.
This is the same group of friends who held the prayer service for Mom on Sunday night. It went well, it was just very emotional. We really appreciated it. I think Mom cried the whole way through, I know I cried for most of it. Mom cries a lot lately. I know she's wearing thin with the whole thing.
I'm tired of the whole back and forth thing. I know the rest of the family is too. I completely understand why she got turned down for the treatments last week, especially since she'd been in the hospital for the same thing 2 times in 8 days. And I'm glad they want to re-evaluate her. I just know they are really tired of making that drive, just to be told, sorry, you don't qualify. At this point, I want it to be either yes, or no. That way, if it is a no, we can start looking for something else and stop re-hashing the whole thing.
I'm really tired tonight, so I think this post is kinda all over the place, sorry about that. Please continue to pray for us.
Sunday, July 12, 2009
Prayer Service
Tonight we wil be having a prayer service for Mom.
One of my parents' really close friends is our former pastor from the church where I grew up. In light of all the stuff that has happened this week, they have decided that they would like to hold a prayer service for Mom.
The group at my parents' house will only be a few people. Mom isn't feeling well again today. We do ask that everyone pray for her as we are holding this service though.
We will have this service from 5-7 pm tonight. At some point during this two-hour period, please pray for Mom. Pray for her healing, for her strength. Please also pray for our family as we will be discussing more options with her oncologist this week.
As always, your prayers over this situation are much appreciated and needed!!
One of my parents' really close friends is our former pastor from the church where I grew up. In light of all the stuff that has happened this week, they have decided that they would like to hold a prayer service for Mom.
The group at my parents' house will only be a few people. Mom isn't feeling well again today. We do ask that everyone pray for her as we are holding this service though.
We will have this service from 5-7 pm tonight. At some point during this two-hour period, please pray for Mom. Pray for her healing, for her strength. Please also pray for our family as we will be discussing more options with her oncologist this week.
As always, your prayers over this situation are much appreciated and needed!!
Saturday, July 11, 2009
How is this?
Just checking with everyone...
Can you follow this OK?
It's become so difficult for me to remember who all I need to update and include on my posts on facebook, that I finally just gave up and decided to create a blog instead. For anyone who hasn't ever followed a blog before, you can select the RSS button (should be a little orange button on the top of your web browser with a white dot and two semi-circles around it) and select "subscribe to this feed.) Follow the given instructions from your browser, and you should be able to access this blog from your favorites pull-down menu, with a tab that says "feeds". You can also subscribe by the button on the left side of the page, below the archives. Then when you click on the Feeds button, if the name of this page is bolded, it means that I've updated the blog and you can click on it to see the updates.
I know I will get questions about the name of this page. In choir at FBC Lakeside, where Pete and I attended for the past 3 years, one of my favorite songs that we've sung is from The Crabb Family, and is called "Through the Fire." The Chorus says something like: "He never promised that the cross would not get heavy, and the hill would not be hard to climb. He never offered our vict'ry without fighting, but He said help would always come in time. So just remember that when you're standing in the valley of decision and the adversary says give in, just hold on. My Lord will show up, and he will take you through the fire again."
The choir director may not know it, but every time we sang this, God used it to soothe my heart. It's only been recently that I can actually sing it without crying the whole way through. Look it up, it's a powerful song.
Anyway, that's where I got the name for this blog. I felt it appropriate, what with all we've gone through this year.
Can you follow this OK?
It's become so difficult for me to remember who all I need to update and include on my posts on facebook, that I finally just gave up and decided to create a blog instead. For anyone who hasn't ever followed a blog before, you can select the RSS button (should be a little orange button on the top of your web browser with a white dot and two semi-circles around it) and select "subscribe to this feed.) Follow the given instructions from your browser, and you should be able to access this blog from your favorites pull-down menu, with a tab that says "feeds". You can also subscribe by the button on the left side of the page, below the archives. Then when you click on the Feeds button, if the name of this page is bolded, it means that I've updated the blog and you can click on it to see the updates.
I know I will get questions about the name of this page. In choir at FBC Lakeside, where Pete and I attended for the past 3 years, one of my favorite songs that we've sung is from The Crabb Family, and is called "Through the Fire." The Chorus says something like: "He never promised that the cross would not get heavy, and the hill would not be hard to climb. He never offered our vict'ry without fighting, but He said help would always come in time. So just remember that when you're standing in the valley of decision and the adversary says give in, just hold on. My Lord will show up, and he will take you through the fire again."
The choir director may not know it, but every time we sang this, God used it to soothe my heart. It's only been recently that I can actually sing it without crying the whole way through. Look it up, it's a powerful song.
Anyway, that's where I got the name for this blog. I felt it appropriate, what with all we've gone through this year.
This is Only a Test... (originally posted 7/8/2009)
...of my nerves and sanity!!
Mom had a pretty lousy weekend. She felt terrible the whole time, didn't even get to enjoy the 4th.
Mom and Dad went to San Antonio to start the trial at CTRC. Trial is probably the right word here, not experimental treatment. So, yesterday (tuesday) they went in to get her started. She told the doctors there that she had been vomiting a lot, and hasn't been able to keep much down. So they checked her blood, and whaddya know, her potassium was dangerously low again. So was something else, but I can't remember what. To keep her from having a heart attack (literally) they admitted her to the hospital down there in San Antonio (Christus Santa Rosa I think) to get her fluids back up. This is the first time that I have not been able to get to her while she's been in the hospital. Obviously, I can't just up and drive 6 hours to see her in the hospital. Aunt Jean and Uncle Everett generoulsy let my dad stay over at their house (Mom and Dad had been at Aunt Elvis' this time - trying hard not to wear out their welcome!!) while all tihs is going on.
So Mom called me last night, very upset. She's upset because she's in the hospital in a different city, and she's afraid Dad's scared (he is) and she's tired that I have to keep being her cheerleader. She puts on a good, brave, front most of the time. She was crying pretty hard, I had a hard time understanding her, but I was able to get most of it.
I reminded her that its all going to work out. We love her, and are always praying for her, that she will get better.
Today, they released her and she is headed back to CTRC to start the treatments for cancer. Mom is very up and down. I can tell that all this back and forth is really taking a toll on her.
Nothing about this has been easy, almost like there's some reason we shouldn't do this treatment. Obstacles just keep popping up. I've been praying and asking if this is the sign to keep persevering, or to the sign to stop. So far, no answer. OK, so for now we keep persevering.
Pray for our sanity! It seems almost like a joke to say that, but lets just say that its a good thing I started hilighting my hair a couple of years ago, so it covers the gray that is creeping in from all this!! Pray for Mom to have some emotional stability. She's so all over the place right now, not that the rest of us aren't. Pray for Dad. I've watched him age about 10 years in the past 2. He loves Mom to death, and will do anything for her, but we can't risk him losing his job with having to take off so much. Pray that Hailey will come to terms with everything. Her method of dealing with all this is to NOT deal with it, and basically pretend it's all OK. Pray that Eric can let himself become more emotionally invested in this. He told me that he refuses to let himself cry or anything, since it all began over two years ago. Even my husband has cried over this, it's not healthy. Pray for Pete and I. I have basically fallen into the role my Mom has always had up till now, of being the famliy cheerleader and support. My sweet hubby has let me fall apart on him so many times. And he just has so much on his plate right now. He takes the Bar exam in less than 3 weeks (think of, three months after you graduated from college, you have a test that is 3 days long that tests everything you ever learned in college in minute detail, and if you don't pass this test, all the work you did in college is worthless until you do pass, because without passing this test, your degree is absolutely worthless.) and is having his "Oh, CRAP!!!" moment. Plus we are searching for a job for him. Preferably here in Fort worth/Dallas/Arlington, so we don't have to move.
OK, that's all for now. Really, I am handling everything OK for now. I am firmly convinced that everything will turn out fine.
************UPDATE 5:15 pm******************
I talked to Mom this afternoon. Currently, the doctors at CTRC feel she is too unstable physically to do this treatment. So, she is out of this program, which is really disappointing.
They will let her know if they have anything new come open, once she is stable. Being in the hospital two times in 7 days is not exactly the essence of stability. From the medical point of view, I get it. It's a HUGE risk to be doing experimental therapy anyway, becuase they really don't know exactly how the drug works, the side effects,etc. Putting someone who is an sunstable as Mom is currently, would probably send their malpractice rates through the roof. And, since I have to pay malpractice for myself, let me tell you - it is NOT CHEAP!!! As a daughter, though...this is heartbreaking. Mom is so disappointed. We were really hoping that this would work. As in, we could actually START treatment. Maybe something else will come open.
Things look pretty bleak right now. Please pray that Mom will stabilize, because with her as unstable as she currently is, she can't really do ANY treatment.
Mom had a pretty lousy weekend. She felt terrible the whole time, didn't even get to enjoy the 4th.
Mom and Dad went to San Antonio to start the trial at CTRC. Trial is probably the right word here, not experimental treatment. So, yesterday (tuesday) they went in to get her started. She told the doctors there that she had been vomiting a lot, and hasn't been able to keep much down. So they checked her blood, and whaddya know, her potassium was dangerously low again. So was something else, but I can't remember what. To keep her from having a heart attack (literally) they admitted her to the hospital down there in San Antonio (Christus Santa Rosa I think) to get her fluids back up. This is the first time that I have not been able to get to her while she's been in the hospital. Obviously, I can't just up and drive 6 hours to see her in the hospital. Aunt Jean and Uncle Everett generoulsy let my dad stay over at their house (Mom and Dad had been at Aunt Elvis' this time - trying hard not to wear out their welcome!!) while all tihs is going on.
So Mom called me last night, very upset. She's upset because she's in the hospital in a different city, and she's afraid Dad's scared (he is) and she's tired that I have to keep being her cheerleader. She puts on a good, brave, front most of the time. She was crying pretty hard, I had a hard time understanding her, but I was able to get most of it.
I reminded her that its all going to work out. We love her, and are always praying for her, that she will get better.
Today, they released her and she is headed back to CTRC to start the treatments for cancer. Mom is very up and down. I can tell that all this back and forth is really taking a toll on her.
Nothing about this has been easy, almost like there's some reason we shouldn't do this treatment. Obstacles just keep popping up. I've been praying and asking if this is the sign to keep persevering, or to the sign to stop. So far, no answer. OK, so for now we keep persevering.
Pray for our sanity! It seems almost like a joke to say that, but lets just say that its a good thing I started hilighting my hair a couple of years ago, so it covers the gray that is creeping in from all this!! Pray for Mom to have some emotional stability. She's so all over the place right now, not that the rest of us aren't. Pray for Dad. I've watched him age about 10 years in the past 2. He loves Mom to death, and will do anything for her, but we can't risk him losing his job with having to take off so much. Pray that Hailey will come to terms with everything. Her method of dealing with all this is to NOT deal with it, and basically pretend it's all OK. Pray that Eric can let himself become more emotionally invested in this. He told me that he refuses to let himself cry or anything, since it all began over two years ago. Even my husband has cried over this, it's not healthy. Pray for Pete and I. I have basically fallen into the role my Mom has always had up till now, of being the famliy cheerleader and support. My sweet hubby has let me fall apart on him so many times. And he just has so much on his plate right now. He takes the Bar exam in less than 3 weeks (think of, three months after you graduated from college, you have a test that is 3 days long that tests everything you ever learned in college in minute detail, and if you don't pass this test, all the work you did in college is worthless until you do pass, because without passing this test, your degree is absolutely worthless.) and is having his "Oh, CRAP!!!" moment. Plus we are searching for a job for him. Preferably here in Fort worth/Dallas/Arlington, so we don't have to move.
OK, that's all for now. Really, I am handling everything OK for now. I am firmly convinced that everything will turn out fine.
************UPDATE 5:15 pm******************
I talked to Mom this afternoon. Currently, the doctors at CTRC feel she is too unstable physically to do this treatment. So, she is out of this program, which is really disappointing.
They will let her know if they have anything new come open, once she is stable. Being in the hospital two times in 7 days is not exactly the essence of stability. From the medical point of view, I get it. It's a HUGE risk to be doing experimental therapy anyway, becuase they really don't know exactly how the drug works, the side effects,etc. Putting someone who is an sunstable as Mom is currently, would probably send their malpractice rates through the roof. And, since I have to pay malpractice for myself, let me tell you - it is NOT CHEAP!!! As a daughter, though...this is heartbreaking. Mom is so disappointed. We were really hoping that this would work. As in, we could actually START treatment. Maybe something else will come open.
Things look pretty bleak right now. Please pray that Mom will stabilize, because with her as unstable as she currently is, she can't really do ANY treatment.
Happy 4th (originally posted 7/2/2009)
Sorry, things have been kinda crazy around here this week. When your Mom is in the hospital for the 3rd time in 6 months, I think you are occasionally allowed to lose your mind.
Mom got to go home Wednesday around lunch. She was very excited. She said that Zoe (poodle) was so excited to see her, but when Dad turned to leave, she got very upset. When she realized Mom was still there, she got super excited again and started jumping on Mom. Maybe not the best thing for Mom's abdomen, but I do know that puppy kisses will heal most wounds!
I think we're taking it easy for the 4th around here. Mom is feeling better, but I don't think she's really up to a house full of company, especially since they just went from 2 people in the house to 4 people in the house within a month. They will probably grill hamburgers (hot dogs don't do so good on her stomach, and she LOVES bratwurst, but we're pretty afraid to try it.) at their house, we might join them. I contemplated offering up my house, but with Pete studying for the bar exam in just a couple of weeks, I'm really trying to keep our lives as stress free as possible. If that's possible. Pete and I will try to go see fireworks that night, maybe bring his parents along. That would be fun, I have awesome in-laws.
This post is much less organized, I guess, but thankfully there isn't a lot to say other than that a) Mom is home, and doing well, and b) they are looking forward to starting the treatments in San Antonio this week. Mom is still hoping she doesn't lose her hair, and the known side effects of these drugs list that as a VERY small possibility. Currently, I'm willing to shave my head, it's so dang hot around here. And I no longer have the long blond hair I used to, now it's short (see photos from Barrister's Ball and Graduation!!).
After my parents get back from San Antonio next week, I'll probably post again to keep everyone updated on how she's doing.
Oh, I also meant to ask, is it easier for me to post notes on here, or would it be easier for everyone if I created a blog, and just updated it periodically? I can do either, I don't really care, but it was mentioned to me by a friend that a blog might be easier. That way everyone can just subscribe to the RSS feed. Whatever, I'm open to suggestions.
Mom got to go home Wednesday around lunch. She was very excited. She said that Zoe (poodle) was so excited to see her, but when Dad turned to leave, she got very upset. When she realized Mom was still there, she got super excited again and started jumping on Mom. Maybe not the best thing for Mom's abdomen, but I do know that puppy kisses will heal most wounds!
I think we're taking it easy for the 4th around here. Mom is feeling better, but I don't think she's really up to a house full of company, especially since they just went from 2 people in the house to 4 people in the house within a month. They will probably grill hamburgers (hot dogs don't do so good on her stomach, and she LOVES bratwurst, but we're pretty afraid to try it.) at their house, we might join them. I contemplated offering up my house, but with Pete studying for the bar exam in just a couple of weeks, I'm really trying to keep our lives as stress free as possible. If that's possible. Pete and I will try to go see fireworks that night, maybe bring his parents along. That would be fun, I have awesome in-laws.
This post is much less organized, I guess, but thankfully there isn't a lot to say other than that a) Mom is home, and doing well, and b) they are looking forward to starting the treatments in San Antonio this week. Mom is still hoping she doesn't lose her hair, and the known side effects of these drugs list that as a VERY small possibility. Currently, I'm willing to shave my head, it's so dang hot around here. And I no longer have the long blond hair I used to, now it's short (see photos from Barrister's Ball and Graduation!!).
After my parents get back from San Antonio next week, I'll probably post again to keep everyone updated on how she's doing.
Oh, I also meant to ask, is it easier for me to post notes on here, or would it be easier for everyone if I created a blog, and just updated it periodically? I can do either, I don't really care, but it was mentioned to me by a friend that a blog might be easier. That way everyone can just subscribe to the RSS feed. Whatever, I'm open to suggestions.
Not as bad this time (originally posted 6/29/2009)
This seems like it should be an easy hospital trip, if such animal exists. I saw Mom today, after she had been in for almost 24 hours, she was feeling much better.
When I spoke to her Saturday afternoon, she was mumbling and trying not to vomit. Apparently, right after we got off the phone she began vomiting and basically couldn't stop. Last night she asked Dad to call her oncologist and take her to the hospital. They did speak to the oncologist, who got everything cleared for her to go in through the ER so she could be admitted to the oncology floor. So they went in to the ER about 5:30 last night, and she told me that they got a room at 4 AM. Nothing like efficiency, let me tell you!
I chose not to go up to the hospital last night. There was nothing for me to do, nowhere for me to be. Dad sat in a hard plastic folding chair next to Mom's bed in the ER for nearly 12 hours. If I was there, we would have had to take turns standing, and both of us had to work today. Besides, I had a patient coming in this morning for half of a full-mouth rehabilitation case, and I needed to be on top of my game for that one.
After work today, I stopped by. She really looked good. Her color was better than I have seen in a few weeks. She was cheery and laughing. I managed to get her laughing hard enough she was crying, so that's a good note. The doctors think she will get to go home maybe Wed or Thurs. Personally, I am betting on Thursday. They just want to make sure she's OK and not send her home too early.
I am currently unsure as to the cause of all this. Cancer, yes. But why? I imagaine she probably ate something she wasn't supposed to (popcorn is her favorite forbidden food, followed by french fries.) but she denies it. She was in some pretty serious pain last week for most of the week. It may have just been building up. I keep reminding her that if she doesn't eat, her intestines won't process the previous thing she ate, and everything just sits there and rots. Lovely picture, I know. But that produces lots of gas, which produces pressure, which leads to pain. So, eating is very necessary. Fluids alone won't cut it.
Oh, I forgot to say something - WE GOT IN TO SAN ANTONIO!!!!!!!!!!! Her urine tests came back within the investigational guidelines. They called today to let her know, but because of the late notice (and the hospitalization) she will be starting NEXT week, rather than this week. She did tell them about being hospitalized, and they said that as long as she can make it down there next week to start (she'll just be 1 week behind the rest of the study) it's OK. I think she'll discharge herself if necessary to make everything work. So Aunt Jean - I think you'll have some company next week!!
OK, that's all for tonight. Honestly, I'm exhausted. Even knowing that everything is OK, and is going to be OK, it's still exhausting with your mom in the hospital for the third time in 6 months. Thankfully, this hospital has free parking. Otherwise I'd be searching for a way to write that off on my taxes next year. (Hmmm, would that count towards medical expenses?)
Thank you all for your prayers. We can feel them, and we all still need them! As always, please forward this to anyone I might have forgotten! I promise I never intentionally leave anyone off the list!!
When I spoke to her Saturday afternoon, she was mumbling and trying not to vomit. Apparently, right after we got off the phone she began vomiting and basically couldn't stop. Last night she asked Dad to call her oncologist and take her to the hospital. They did speak to the oncologist, who got everything cleared for her to go in through the ER so she could be admitted to the oncology floor. So they went in to the ER about 5:30 last night, and she told me that they got a room at 4 AM. Nothing like efficiency, let me tell you!
I chose not to go up to the hospital last night. There was nothing for me to do, nowhere for me to be. Dad sat in a hard plastic folding chair next to Mom's bed in the ER for nearly 12 hours. If I was there, we would have had to take turns standing, and both of us had to work today. Besides, I had a patient coming in this morning for half of a full-mouth rehabilitation case, and I needed to be on top of my game for that one.
After work today, I stopped by. She really looked good. Her color was better than I have seen in a few weeks. She was cheery and laughing. I managed to get her laughing hard enough she was crying, so that's a good note. The doctors think she will get to go home maybe Wed or Thurs. Personally, I am betting on Thursday. They just want to make sure she's OK and not send her home too early.
I am currently unsure as to the cause of all this. Cancer, yes. But why? I imagaine she probably ate something she wasn't supposed to (popcorn is her favorite forbidden food, followed by french fries.) but she denies it. She was in some pretty serious pain last week for most of the week. It may have just been building up. I keep reminding her that if she doesn't eat, her intestines won't process the previous thing she ate, and everything just sits there and rots. Lovely picture, I know. But that produces lots of gas, which produces pressure, which leads to pain. So, eating is very necessary. Fluids alone won't cut it.
Oh, I forgot to say something - WE GOT IN TO SAN ANTONIO!!!!!!!!!!! Her urine tests came back within the investigational guidelines. They called today to let her know, but because of the late notice (and the hospitalization) she will be starting NEXT week, rather than this week. She did tell them about being hospitalized, and they said that as long as she can make it down there next week to start (she'll just be 1 week behind the rest of the study) it's OK. I think she'll discharge herself if necessary to make everything work. So Aunt Jean - I think you'll have some company next week!!
OK, that's all for tonight. Honestly, I'm exhausted. Even knowing that everything is OK, and is going to be OK, it's still exhausting with your mom in the hospital for the third time in 6 months. Thankfully, this hospital has free parking. Otherwise I'd be searching for a way to write that off on my taxes next year. (Hmmm, would that count towards medical expenses?)
Thank you all for your prayers. We can feel them, and we all still need them! As always, please forward this to anyone I might have forgotten! I promise I never intentionally leave anyone off the list!!
Still Hoping and Praying (originally posted 6/24/2009)
I know Mom is just going to LOVE me posting all of this, but she did ask me to keep everyone updated, so...
Mom and Dad went down to San Antonio Monday for her tests at CTRC. Thanks for letting them stay with you, Aunt Jean, I know they really appreciated it and enjoyed it!
Her tests were Tuesday. They said that everything came back within the parameters they are looking for, except the protein count in the urine. It was too high. So now they are doing a 24-hour urine collection to be analyzed for total protein count or something to that effect. Reminder to my brother - the red jar is NOT apple juice or iced tea!! They are hoping that the total protein count will be sufficient to get her in. If it's still too high, the doctors at CTRC are basically going to beg, plead, coerce, etc to get Mom still accepted into the study.
So we are still praying that this will eventually work out. They did tell her to plan on being there next week to start treatments, which is a huge plus.
I know God says that things aren't always going to be easy, but seriously, can we get a break? Must we always have to have EVERY single stinking obstacle thrown in our way? Jeeze.
I know that everything will work in God's timing, and I have accepted that. However, lots of doctors think they are god (just ask surgeons, especially transplant surgeons!!) and have timetables set. I know that God will overrule their little kingdoms, but I still want my Mom to get the study so she can get the treatment she needs.
Please keep praying that it will all work out, and quickly!! I swear, I'm never again going to pray for patience...
Mom and Dad went down to San Antonio Monday for her tests at CTRC. Thanks for letting them stay with you, Aunt Jean, I know they really appreciated it and enjoyed it!
Her tests were Tuesday. They said that everything came back within the parameters they are looking for, except the protein count in the urine. It was too high. So now they are doing a 24-hour urine collection to be analyzed for total protein count or something to that effect. Reminder to my brother - the red jar is NOT apple juice or iced tea!! They are hoping that the total protein count will be sufficient to get her in. If it's still too high, the doctors at CTRC are basically going to beg, plead, coerce, etc to get Mom still accepted into the study.
So we are still praying that this will eventually work out. They did tell her to plan on being there next week to start treatments, which is a huge plus.
I know God says that things aren't always going to be easy, but seriously, can we get a break? Must we always have to have EVERY single stinking obstacle thrown in our way? Jeeze.
I know that everything will work in God's timing, and I have accepted that. However, lots of doctors think they are god (just ask surgeons, especially transplant surgeons!!) and have timetables set. I know that God will overrule their little kingdoms, but I still want my Mom to get the study so she can get the treatment she needs.
Please keep praying that it will all work out, and quickly!! I swear, I'm never again going to pray for patience...
Maybe... (originally posted 6/16/2009)
I've never been so excited in my life about a tentative yes for San Antonio! OK, when I got wait-listed for dental school there, and hadn't heard from Baylor or Houston yet, I was pretty excited.
But this is also good! Mom got a call from CTRC saying that, tentatively, depending on her test results this week, she's in! One of Dr Ruxer's (oncologist) friends works in Arizona, I think at the Mayo clinic, and he is also a cancer researcher. Anyway, Dr Ruxer had sent his friend some samples of Mom's tumor tissue from her surgery back in January. This friend has access to basically all the drugs that are being tested, and matches tissue types to the medication that would be most effective for that particular tumor.
It turns out that the one that is a PERFECT match for Mom is the drug they are using at CTRC!!! It is being used in combination with another chemo drug that they have known for many years work on lung cancer, it just hasn't been FDA approved for Carcinoid/Neuroendocrine cancers. But, 1) because it is such a rare form of cancer, very few things are approved for use with carcinoid, and 2) that's the POINT of research hospitals, is to TRY stuff. Basically, nothing else has worked, and this works well on some other cancers, so, well, lets give it a try!
As excited as we are, we are trying to not get TOO attached to the idea. Reference my note a few weeks ago about living life on a roller coaster. However, this just seems to be headed in the right direction...maybe...finally...some hope.
But this is also good! Mom got a call from CTRC saying that, tentatively, depending on her test results this week, she's in! One of Dr Ruxer's (oncologist) friends works in Arizona, I think at the Mayo clinic, and he is also a cancer researcher. Anyway, Dr Ruxer had sent his friend some samples of Mom's tumor tissue from her surgery back in January. This friend has access to basically all the drugs that are being tested, and matches tissue types to the medication that would be most effective for that particular tumor.
It turns out that the one that is a PERFECT match for Mom is the drug they are using at CTRC!!! It is being used in combination with another chemo drug that they have known for many years work on lung cancer, it just hasn't been FDA approved for Carcinoid/Neuroendocrine cancers. But, 1) because it is such a rare form of cancer, very few things are approved for use with carcinoid, and 2) that's the POINT of research hospitals, is to TRY stuff. Basically, nothing else has worked, and this works well on some other cancers, so, well, lets give it a try!
As excited as we are, we are trying to not get TOO attached to the idea. Reference my note a few weeks ago about living life on a roller coaster. However, this just seems to be headed in the right direction...maybe...finally...some hope.
San Antonio bound...maybe? (originally posted 6/14/2009)
A couple of weeks ago, we were turned down by Dallas for the experimental chemo treatments. The next day, as it turned out, Mom got a call from CTRC in San Antonio.
Her oncologist had talked to us previously about CTRC. He likes the hospital, says they are doing some really good work with cancer treatments. They wanted Mom to come down so that they could see if she is a candidate for any of their studies.
Mom and Dad went down there last week. Some of yall got to see her and spend time with her, which I know she enjoyed. The doctors there think that she may be a candidate for not one, but two different studies. They are submitting her for both, and we will see what comes back. Hopefully, we will find out within the next couple of weeks. The doctors were very optimistic. They said that the next round of treatments begins at the end of the month, so they would like to get her in on this round.
Currently, she has been off any sort of chemo at all for over 2 months. While that seems like under-treatment, and truly is, the meds just make her so sick. She took chemo for about 3 months, and was in the hospital twice, and the whole time we were afraid we were about to put her back in the hopsital AGAIN at any moment! As Mom so eloquently puts it, "My body just doesn't seem to like having cancer."
I am taking the day off work tomorrow to go to the oncologist with her. We are going to discuss some things that I have discovered through (a lot of) reseach on my part, including diet, exercise, vitamins, and the possibilty of going to MD Anderson in Houston if San Antonio doesn't work out. She is fairly opposed to the idea of Houston, but, having lived there for 4 years, I can help with that. The really big issue would be where to stay. Anderson has a hotel attached to the hospital by a skybridge, but it's pretty expensive. There are other hotels around, but then the issue is getting to the hospital. Plus, then we have the issue of getting her to Houston in the first place.
Getting to the city of treatment is an issue anyway. Dad can take off work, but only so often. I am the same way. I have a much easier time of picking up than dropping off, even within Fort Worth, because we are a one-income family, and I have no paid time off. If I don't work, I don't get paid, end of story. Pete is studying for the bar exam, and has his own mountain of issues to deal with right now, including finding a job, poor guy. Plus supporting me through this whole ordeal. He has truly been a huge blessing in my life, and I haven't thanked him enough for it. Granny and PawPaw can take Mom, but they also have things to do, and when Mom was trying to explain the schedules for the treatments, PawPaw said, "well, we can do these days, but we'll have to think about the others." They don't quite get that with experimental treatments, you have to run on their schedule, or you aren't in the program.
Please continue to pray for us. Today, during the sermon, I finally got the sense of peace that I have been without for the whole time. I know, beyond a shadow of a doubt, that it will all work out. Hopefully, God will just wave His hand and she will be healed. However, I can finally see Him working in all this. Up till now, I've been very angry and hurt. Why MY Mom? What did she ever do? What did I ever do? Today, somehow, He finally revealed to me and my thick head that it's not about ME, or HER. It's all about HIM. He will be glorified. He will comfort all of us, including Mom, through all this. Right now, He is carrying us all, because when I look backwards over the last six months (good lord, it feels like ten years) I can only see the one set of footprints, and they are way too big and firm to be mine. On my iPod, I have a song that I had forgotten about - the chorus says "Sometimes he calms the storm/With a whisper "peace, be still"/He can settle any sea/But it doesn't mean He will/Sometimes He holds us close/And lets the wind and waves go wild/Sometimes He calms the storm/Other times He calms his Child." When that came on yesterday, I just hit the ground. We are continuing to struggle with all this, but we have the Hope that regardless of the outcome of this battle Mom is facing, we will all be together forever.
As always, please send this to anyone whom I may have inadvertently forgotten!
Her oncologist had talked to us previously about CTRC. He likes the hospital, says they are doing some really good work with cancer treatments. They wanted Mom to come down so that they could see if she is a candidate for any of their studies.
Mom and Dad went down there last week. Some of yall got to see her and spend time with her, which I know she enjoyed. The doctors there think that she may be a candidate for not one, but two different studies. They are submitting her for both, and we will see what comes back. Hopefully, we will find out within the next couple of weeks. The doctors were very optimistic. They said that the next round of treatments begins at the end of the month, so they would like to get her in on this round.
Currently, she has been off any sort of chemo at all for over 2 months. While that seems like under-treatment, and truly is, the meds just make her so sick. She took chemo for about 3 months, and was in the hospital twice, and the whole time we were afraid we were about to put her back in the hopsital AGAIN at any moment! As Mom so eloquently puts it, "My body just doesn't seem to like having cancer."
I am taking the day off work tomorrow to go to the oncologist with her. We are going to discuss some things that I have discovered through (a lot of) reseach on my part, including diet, exercise, vitamins, and the possibilty of going to MD Anderson in Houston if San Antonio doesn't work out. She is fairly opposed to the idea of Houston, but, having lived there for 4 years, I can help with that. The really big issue would be where to stay. Anderson has a hotel attached to the hospital by a skybridge, but it's pretty expensive. There are other hotels around, but then the issue is getting to the hospital. Plus, then we have the issue of getting her to Houston in the first place.
Getting to the city of treatment is an issue anyway. Dad can take off work, but only so often. I am the same way. I have a much easier time of picking up than dropping off, even within Fort Worth, because we are a one-income family, and I have no paid time off. If I don't work, I don't get paid, end of story. Pete is studying for the bar exam, and has his own mountain of issues to deal with right now, including finding a job, poor guy. Plus supporting me through this whole ordeal. He has truly been a huge blessing in my life, and I haven't thanked him enough for it. Granny and PawPaw can take Mom, but they also have things to do, and when Mom was trying to explain the schedules for the treatments, PawPaw said, "well, we can do these days, but we'll have to think about the others." They don't quite get that with experimental treatments, you have to run on their schedule, or you aren't in the program.
Please continue to pray for us. Today, during the sermon, I finally got the sense of peace that I have been without for the whole time. I know, beyond a shadow of a doubt, that it will all work out. Hopefully, God will just wave His hand and she will be healed. However, I can finally see Him working in all this. Up till now, I've been very angry and hurt. Why MY Mom? What did she ever do? What did I ever do? Today, somehow, He finally revealed to me and my thick head that it's not about ME, or HER. It's all about HIM. He will be glorified. He will comfort all of us, including Mom, through all this. Right now, He is carrying us all, because when I look backwards over the last six months (good lord, it feels like ten years) I can only see the one set of footprints, and they are way too big and firm to be mine. On my iPod, I have a song that I had forgotten about - the chorus says "Sometimes he calms the storm/With a whisper "peace, be still"/He can settle any sea/But it doesn't mean He will/Sometimes He holds us close/And lets the wind and waves go wild/Sometimes He calms the storm/Other times He calms his Child." When that came on yesterday, I just hit the ground. We are continuing to struggle with all this, but we have the Hope that regardless of the outcome of this battle Mom is facing, we will all be together forever.
As always, please send this to anyone whom I may have inadvertently forgotten!
I feel like I'm living on a roller coaster (originally posted on 5/28/2009)
So, today, after all the waiting, all the hoping and answered prayers, we got some news that was pretty devastating.
The hospital in Dallas that had accepted Mom for her experimental chemo stuff called to tell her that she was no longer a candidate. Basically, some of her blood levels are too high, plus she has been treated with more than one kind of chemo, so it boils down to she is too advanced too qualify for this clinical trial.
I am going back and forth between crying/sadness and anger.
I am so sad, because I'm just not ready to give up, but NOTHING is working. Everywhere we turn, every time we get the teensiest sliver of hope, it is just completely obliterated. I'm also angry, furious really, because what kind of people give someone hope that hey, this just might be the cure that we've been searching for for the past few years, then oh, sorry, we can't offer you that hope becaues we think you're too sick. Back to square one. Better off if they'd not bothered wasting our time for the past month.
We are going to be trying to get her in at MD Anderson with some clinical trials that look promising, we have to get her oncologist to sign off on it first. Lots of the medical stuff we learned during dental school is fading (sorry to all those professors who tried so hard to stuff it in my brain...) but I can still interpret what the trials are looking for/not looking for - mostly. We also may get a second opinion from another oncologist. While I think her oncologist is terrific, he has actually encouraged us to get a second and third opinion, so we might get more options.
Thankfully, a friend of a friend has been dealing with this for the past 5 years. OK, not really thankfully, becaues it totally sucks for her. But at least there is someone else out there who has dealt with this. Anyway, this young lady was given about 6 months to live over 5 years ago, and like mom, she has a VERY rare form of cancer. She has graciously passed on her oncologists' information, and is actively looking for more clinical trials mom might qualify for.
I cannot express my thanks enough to this young woman. She has never met us, would never know us if she passed us on the street. Yet, becuase of all she has gone through, she is working hard to help us out.
I guess right now we all feel like the air was let out of the balloon. We finally had some hope for this cancer, and frankly we're pretty devastated. I feel like we're just living on the roller coaster, trying to not get too excited about anything positive, becuase we've had the rug jerked out from under us so much that, by this point, we kinda expect it. Think Charlie Brown with the football...so hopeful each time that he won't just end up on his rear...yet he ends up there regardless. Currently, I can empathize.
This is probably one of the lowest nights I've had in months. I know it is for my parents as well. We're just not ready to give up and call it quits though, which is good. But we also know that this next phase is probably going to be more difficult. God only knows, which is good, because I can hardly handle it as it comes, I can't imagine if I actually knew what was coming. It's all just so overwhelming. Please continue your prayers for our whole family.
The hospital in Dallas that had accepted Mom for her experimental chemo stuff called to tell her that she was no longer a candidate. Basically, some of her blood levels are too high, plus she has been treated with more than one kind of chemo, so it boils down to she is too advanced too qualify for this clinical trial.
I am going back and forth between crying/sadness and anger.
I am so sad, because I'm just not ready to give up, but NOTHING is working. Everywhere we turn, every time we get the teensiest sliver of hope, it is just completely obliterated. I'm also angry, furious really, because what kind of people give someone hope that hey, this just might be the cure that we've been searching for for the past few years, then oh, sorry, we can't offer you that hope becaues we think you're too sick. Back to square one. Better off if they'd not bothered wasting our time for the past month.
We are going to be trying to get her in at MD Anderson with some clinical trials that look promising, we have to get her oncologist to sign off on it first. Lots of the medical stuff we learned during dental school is fading (sorry to all those professors who tried so hard to stuff it in my brain...) but I can still interpret what the trials are looking for/not looking for - mostly. We also may get a second opinion from another oncologist. While I think her oncologist is terrific, he has actually encouraged us to get a second and third opinion, so we might get more options.
Thankfully, a friend of a friend has been dealing with this for the past 5 years. OK, not really thankfully, becaues it totally sucks for her. But at least there is someone else out there who has dealt with this. Anyway, this young lady was given about 6 months to live over 5 years ago, and like mom, she has a VERY rare form of cancer. She has graciously passed on her oncologists' information, and is actively looking for more clinical trials mom might qualify for.
I cannot express my thanks enough to this young woman. She has never met us, would never know us if she passed us on the street. Yet, becuase of all she has gone through, she is working hard to help us out.
I guess right now we all feel like the air was let out of the balloon. We finally had some hope for this cancer, and frankly we're pretty devastated. I feel like we're just living on the roller coaster, trying to not get too excited about anything positive, becuase we've had the rug jerked out from under us so much that, by this point, we kinda expect it. Think Charlie Brown with the football...so hopeful each time that he won't just end up on his rear...yet he ends up there regardless. Currently, I can empathize.
This is probably one of the lowest nights I've had in months. I know it is for my parents as well. We're just not ready to give up and call it quits though, which is good. But we also know that this next phase is probably going to be more difficult. God only knows, which is good, because I can hardly handle it as it comes, I can't imagine if I actually knew what was coming. It's all just so overwhelming. Please continue your prayers for our whole family.
No hospital Today... (originally posted 4/8/2009)
Last night was not a good night.
First, Granny called me before I got off work to tell me that Mom wasn't eating anything, wasn't drinking anything, barely talking. I do realize that my grandmather has a tendency to be WAY more panicky than I do, and overreacts more than I do in this situation, because it's her daughter. However, having talked to Mom earlier in the day, I knew she was in tremendous pain, and took her at her word. Dad was out of town on a business trip, which had already been rescheduled three or four times, and really couldn't be rescheduled again.
So I called her oncologist. Can I just mention how thankful I am that she has a terrific oncologist? And one of her nurses has been a friend of mom's for many, many years. I think they were on PTA together when I was in elementary school. The nurse called me back about 6:15, and I talked with her about what was going on. She told me that I needed to get some fluids into Mom, and if she needed to go to the ER, to just go. And moved her appt for 3:30 today up to 8:30 am.
I spent the evening with Mom, and forced her to drink some vanilla Ensure that I had blended with ice to make a slushy. She kept it down, which was good, but said it felt like a rock iin her stomach. What was really concerning to me was that she was taking Dilaudid (one of the strongest pain meds, used frequently with patients who have had amputations and have "phantom pain") every 2 hours. I felt bad for my grandparents, becuase I know they were exhausted and worried, but have been staying with Mom while Dad was gone. So I had Pete bring over our good air mattress for them to sleep on, so that if she needed to go to the ER during the night, they would be able to hear her.
Thankfully, I didn't get a phone call saying they were going to the ER last night after I left. They took her to the Dr this morning, who placed an IV and gave her about a liter or so of Saline with some dextrose in it, to help perk her up. We had a mercifully slow day at work, and the office manager let me off about lunchtime to go help take care of mom. Even when you're a doctor, if you work for someone else, you have to get permission to leave early just like everyone else.
The oncologist dismissed her about 3 this afternoon, and I brought Mom home. But not before she requested to stop at Sonic for a Strawberry limeade slush. She loves those things! We got her changed back into pajamas, and she's sleeping now. Has been off and on for a couple of hours.
The oncologist changed her meds. She is not to take her chemo until we get her back to being stable. We might look at going the IV route, as opposed to the oral route, if she can't get any good days. Quality of life is very important, as everyone who has supported someone through cancer knows! He changed her blood pressure meds, and changed her to a pain patch as opposed to the pills. This will give her more continual relief, we just have to change the patch every 3 days.
She was in some pain after we got back home and she laid down, but I noticed it was when she laid flat on her back. I suggested that we prop her up, and now she is sleeping comfortably. I think (and this and 50 cents will buy you a coke) that when she lays flat, the gas in her stomach can't escape, so it feels very bloated and painful. But if she is propped up, the gas is able to move, so she is able to be comfortable. Anyway , it makes sense to me.
Please continue to keep us in your prayers. We have made the decision to postpone Easter lunch for now. Eric will be home in a couple of weeks, so we will have a joint late Easter/Eric's home celebration. She's just not up to having it right now, and it really upsets her to miss family stuff.
First, Granny called me before I got off work to tell me that Mom wasn't eating anything, wasn't drinking anything, barely talking. I do realize that my grandmather has a tendency to be WAY more panicky than I do, and overreacts more than I do in this situation, because it's her daughter. However, having talked to Mom earlier in the day, I knew she was in tremendous pain, and took her at her word. Dad was out of town on a business trip, which had already been rescheduled three or four times, and really couldn't be rescheduled again.
So I called her oncologist. Can I just mention how thankful I am that she has a terrific oncologist? And one of her nurses has been a friend of mom's for many, many years. I think they were on PTA together when I was in elementary school. The nurse called me back about 6:15, and I talked with her about what was going on. She told me that I needed to get some fluids into Mom, and if she needed to go to the ER, to just go. And moved her appt for 3:30 today up to 8:30 am.
I spent the evening with Mom, and forced her to drink some vanilla Ensure that I had blended with ice to make a slushy. She kept it down, which was good, but said it felt like a rock iin her stomach. What was really concerning to me was that she was taking Dilaudid (one of the strongest pain meds, used frequently with patients who have had amputations and have "phantom pain") every 2 hours. I felt bad for my grandparents, becuase I know they were exhausted and worried, but have been staying with Mom while Dad was gone. So I had Pete bring over our good air mattress for them to sleep on, so that if she needed to go to the ER during the night, they would be able to hear her.
Thankfully, I didn't get a phone call saying they were going to the ER last night after I left. They took her to the Dr this morning, who placed an IV and gave her about a liter or so of Saline with some dextrose in it, to help perk her up. We had a mercifully slow day at work, and the office manager let me off about lunchtime to go help take care of mom. Even when you're a doctor, if you work for someone else, you have to get permission to leave early just like everyone else.
The oncologist dismissed her about 3 this afternoon, and I brought Mom home. But not before she requested to stop at Sonic for a Strawberry limeade slush. She loves those things! We got her changed back into pajamas, and she's sleeping now. Has been off and on for a couple of hours.
The oncologist changed her meds. She is not to take her chemo until we get her back to being stable. We might look at going the IV route, as opposed to the oral route, if she can't get any good days. Quality of life is very important, as everyone who has supported someone through cancer knows! He changed her blood pressure meds, and changed her to a pain patch as opposed to the pills. This will give her more continual relief, we just have to change the patch every 3 days.
She was in some pain after we got back home and she laid down, but I noticed it was when she laid flat on her back. I suggested that we prop her up, and now she is sleeping comfortably. I think (and this and 50 cents will buy you a coke) that when she lays flat, the gas in her stomach can't escape, so it feels very bloated and painful. But if she is propped up, the gas is able to move, so she is able to be comfortable. Anyway , it makes sense to me.
Please continue to keep us in your prayers. We have made the decision to postpone Easter lunch for now. Eric will be home in a couple of weeks, so we will have a joint late Easter/Eric's home celebration. She's just not up to having it right now, and it really upsets her to miss family stuff.
No Surgery!!! At least for now... (originally posted 4/3/2009)
Hi everyone.
Let me start by apologizing for how panicky I was on Monday night. Like everyone else, I have a really bad day whenever we have to put Mom in the hospital. With her hving cancer, we never know exactly what all is going on, and I tend to get a bit panicky until we know more of what's going on.
Wednesday, they ran the small bowel follow-through, the test where they were determining how long it took the barium (radioactive dye that shows up on XRays) to go from her stomach to her colon. The surgeon told us that if it was over 8 hours, we would need surgery. Wednesday night he told us that the films from hour 7 showed the dye almost to the colon, and the films from hour 8 showed the dye well into the colon. Since it was very borderline, they ran more tests yesterday (Thursday) to see where the rest of the barium was. If it was completely into the colon/rectum area, we should be OK, but if there was still any in the small intestine, we needed to seriously consider surgery.
So, after wating at the hospital until 10:30 for the surgeon to show up last night (he never did), I went back this morning. He was in the room when I got there, and was telling Mom that this looks like a low-grade obstruction, and we are able to avoid surgery! He did caution us that this is not the end of the story. This will happen again. At some point, we will end up having another surgery, possibly ending up with a colostomy bag. Obviously, we want to avoid this as long as we can. However, it's totally in God's hands.
We think Mom should be able to start back on her Chemo meds soon, but the oncologist and surgeon are consulting to decide if maybe these drugs partially caused the obstruction. That would be very odd, considering how the drugs work, but it is possible. So, we'll keep an eye on that.
The oncologist said that we will probably get to go home Sunday, we are seeing how she does with solid foods again. No point in dismissing her if she will just end up in the hospital again with the same problem in two days.
Thank you all for your prayers. We keep asking for more prayers, because we really feel like we need them right now. Dad and I have been praying a lot lately. God has really started giving us peace about everything. Obviously, we don't know how long the battle will be, but we are treasuring all the time we have. The doctors are very positive though, and said we don't need to look at the idea of losing her for qute a while.
Dad said something this week that I have quoted a lot since he said it, because it truly matched what I've been feeling. God promises that He won't give us more than we can handle, which proves one thing - He knows me a whole lot better than I do! This is so hard to go through, but we really appreciate the prayers, and I know they are working. Even if Mom isn't healed, at least we are beginning to really accept this, and will eventally get to where we ar OK with it. God's plan is better than our plan, even though He and I have been arguing that point for a couple of months now, at least in the case of Mom. :-)
As always, please forward this to anyone in the family that I forgot, and I'm sorry if I leave anyone out!
Let me start by apologizing for how panicky I was on Monday night. Like everyone else, I have a really bad day whenever we have to put Mom in the hospital. With her hving cancer, we never know exactly what all is going on, and I tend to get a bit panicky until we know more of what's going on.
Wednesday, they ran the small bowel follow-through, the test where they were determining how long it took the barium (radioactive dye that shows up on XRays) to go from her stomach to her colon. The surgeon told us that if it was over 8 hours, we would need surgery. Wednesday night he told us that the films from hour 7 showed the dye almost to the colon, and the films from hour 8 showed the dye well into the colon. Since it was very borderline, they ran more tests yesterday (Thursday) to see where the rest of the barium was. If it was completely into the colon/rectum area, we should be OK, but if there was still any in the small intestine, we needed to seriously consider surgery.
So, after wating at the hospital until 10:30 for the surgeon to show up last night (he never did), I went back this morning. He was in the room when I got there, and was telling Mom that this looks like a low-grade obstruction, and we are able to avoid surgery! He did caution us that this is not the end of the story. This will happen again. At some point, we will end up having another surgery, possibly ending up with a colostomy bag. Obviously, we want to avoid this as long as we can. However, it's totally in God's hands.
We think Mom should be able to start back on her Chemo meds soon, but the oncologist and surgeon are consulting to decide if maybe these drugs partially caused the obstruction. That would be very odd, considering how the drugs work, but it is possible. So, we'll keep an eye on that.
The oncologist said that we will probably get to go home Sunday, we are seeing how she does with solid foods again. No point in dismissing her if she will just end up in the hospital again with the same problem in two days.
Thank you all for your prayers. We keep asking for more prayers, because we really feel like we need them right now. Dad and I have been praying a lot lately. God has really started giving us peace about everything. Obviously, we don't know how long the battle will be, but we are treasuring all the time we have. The doctors are very positive though, and said we don't need to look at the idea of losing her for qute a while.
Dad said something this week that I have quoted a lot since he said it, because it truly matched what I've been feeling. God promises that He won't give us more than we can handle, which proves one thing - He knows me a whole lot better than I do! This is so hard to go through, but we really appreciate the prayers, and I know they are working. Even if Mom isn't healed, at least we are beginning to really accept this, and will eventally get to where we ar OK with it. God's plan is better than our plan, even though He and I have been arguing that point for a couple of months now, at least in the case of Mom. :-)
As always, please forward this to anyone in the family that I forgot, and I'm sorry if I leave anyone out!
Back in the Hospital (originally posted 3/30/2009)
Hi everyone.
Just wanted to let you know what is going on with mom.
She got sick on Friday, having really bad stomach pains. Started throwing up Friday evening, threw up pretty much every 2 hours till Saturday morning. She called the doctor Saturday, they told her to do the normal severe nausea stuff (Bananas, Applesauce, dy toast) and see how she was doing.
This morning, they called the doctor (oncologist) again because she still couldn't hold anything down. She hasnt been able to take her Chemo meds since Thursday, because she can't keep anything down.The doctor put her back in the hospital. She is once again very dehydrated, with a dangerously low potassium level.
I was still there when the surgeon came in. He said that it appears she has another obstruction, this time in her small intestine. We don't kow at this time if it is a tumor or a blockage. They are going to try to get rid of the blockage by using medications, and do a small bowel infusion (? I don't know if that's the right term) to try and determine how severly blocked she is. He doesn't want to do surgery unless it is absolutely necessary becuase she just had such a major surgery a few weeks ago. Also, the chemo meds she is currently on inhibit blood vessels from growing, so that's another complication for potential surgery.
Please keep our family in your prayers. I will update you again as soon as I have anything. Please forward this to any family members I missed, too. Thank you.
Just wanted to let you know what is going on with mom.
She got sick on Friday, having really bad stomach pains. Started throwing up Friday evening, threw up pretty much every 2 hours till Saturday morning. She called the doctor Saturday, they told her to do the normal severe nausea stuff (Bananas, Applesauce, dy toast) and see how she was doing.
This morning, they called the doctor (oncologist) again because she still couldn't hold anything down. She hasnt been able to take her Chemo meds since Thursday, because she can't keep anything down.The doctor put her back in the hospital. She is once again very dehydrated, with a dangerously low potassium level.
I was still there when the surgeon came in. He said that it appears she has another obstruction, this time in her small intestine. We don't kow at this time if it is a tumor or a blockage. They are going to try to get rid of the blockage by using medications, and do a small bowel infusion (? I don't know if that's the right term) to try and determine how severly blocked she is. He doesn't want to do surgery unless it is absolutely necessary becuase she just had such a major surgery a few weeks ago. Also, the chemo meds she is currently on inhibit blood vessels from growing, so that's another complication for potential surgery.
Please keep our family in your prayers. I will update you again as soon as I have anything. Please forward this to any family members I missed, too. Thank you.
Update on Mom/Donna (originally posted 2/4/2009)
So, for the family, and my friends who have been asking, here's the latest update on Mom.
The surgery went as well as we could have hoped for, based on what they found.
The problem was in her sigmoid colon (the part that leads directly to the rectum), it was very constricted. It turned out there was a large tumor growing around that part, which explains the constriction.
Also, the doctors found that the cancer has spread some more. There are now 11 tumors on her liver, where 2 years ago there were 2. There is a tumor growing on the back side of the bladder, and another deep in her pelvis. They chose not to remove any of the other spots because they could not reach everything down in her pelvis, and if they do not remove the entire tumor, it will grow back faster and bigger than it was originally.
OK, now some good news.
The pathology report so far shows that the tumors are all carcinoid tumors, which makes perfect sense, because she has carcinoid syndrome. This is good, because it means that even though the cancer is spreading, it is not growing more malignant.
Also, they were able to connect the remaining part of the colon to the rectum, so...no colostomy bag! The surgeon did say that when the cancer causes another problem like the one she had, there probably won't be an option, she will almost definitely have a colostomy bag at that point. But, that should be a couple of years down the road.
So for right now, they are discussing options. Obviously, the treatment course they have been pursuing hasn't been working. They are discussing the ideas of chemotherapy, possible radiation, experimental treatments, etc. Once they have decided on a course of action, I will let everyone know.
For now, we really are appreciating everyone's prayers. This has frankly been one of the most difficult things we have ever gone through, and we would not be able to be holding together without everyone's love and support. And it's not over, its a very long road. Please continue to hold our family in your prayers, becuase we are all struggling.
Thanks.
The surgery went as well as we could have hoped for, based on what they found.
The problem was in her sigmoid colon (the part that leads directly to the rectum), it was very constricted. It turned out there was a large tumor growing around that part, which explains the constriction.
Also, the doctors found that the cancer has spread some more. There are now 11 tumors on her liver, where 2 years ago there were 2. There is a tumor growing on the back side of the bladder, and another deep in her pelvis. They chose not to remove any of the other spots because they could not reach everything down in her pelvis, and if they do not remove the entire tumor, it will grow back faster and bigger than it was originally.
OK, now some good news.
The pathology report so far shows that the tumors are all carcinoid tumors, which makes perfect sense, because she has carcinoid syndrome. This is good, because it means that even though the cancer is spreading, it is not growing more malignant.
Also, they were able to connect the remaining part of the colon to the rectum, so...no colostomy bag! The surgeon did say that when the cancer causes another problem like the one she had, there probably won't be an option, she will almost definitely have a colostomy bag at that point. But, that should be a couple of years down the road.
So for right now, they are discussing options. Obviously, the treatment course they have been pursuing hasn't been working. They are discussing the ideas of chemotherapy, possible radiation, experimental treatments, etc. Once they have decided on a course of action, I will let everyone know.
For now, we really are appreciating everyone's prayers. This has frankly been one of the most difficult things we have ever gone through, and we would not be able to be holding together without everyone's love and support. And it's not over, its a very long road. Please continue to hold our family in your prayers, becuase we are all struggling.
Thanks.
The Beginning (originally posted 1/30/09)
Hey yall, I wanted to let you know what's going on with Mom (Donna).
She's really been pretty sick since Christmas, hasn't really been able to eat much at all. We thought she finally got better just after New Year's, because she was feeling better. This week has been pretty hard though.
She's been having severe pain every time she eats, feeling like her stomach is on fire, and its been getting worse instead of better. Her oncologist wanted to do a CT scan on her, but the insurance threw a total fit about it, so they had to do the whole pre-authorization thing. Well, in the meantime, she was getting worse, vomiting every time she ate anything.
So on Wednesday, the oncologist finally told her he couldn't really do anything else, other than put her in the hospital. By this point, she was ready to go to the hospital. So they admitted her.
They have done the CT scan, she has a massive infection in the half of her large intestine that she still has. She is on IV antibiotics (2 kinds) for at least a week, then they will re-evaluate. She may go a second week, or a third week, or a fourth week. The other option is to remove the rest of her large intestine, which she would really like to avoid.
This morning they attempted to do a colonoscopy, but were unable to do so, and had to settle for XRays of the area. So the surgeons and oncologist and GI doctors are consulting to decide if we should move the surgery up on the options list.
Pray for her, that the antibiotics will take care of everything. That she doesn't need surgery. Or that, if she does need the surgery, this will just fix everything. It's been a really stressful week, and month. And I don't live with it every day.
Pray for my dad, he is having a hard time with all this, as would any of us who had a spouse going through all this. I'll keep updating
She's really been pretty sick since Christmas, hasn't really been able to eat much at all. We thought she finally got better just after New Year's, because she was feeling better. This week has been pretty hard though.
She's been having severe pain every time she eats, feeling like her stomach is on fire, and its been getting worse instead of better. Her oncologist wanted to do a CT scan on her, but the insurance threw a total fit about it, so they had to do the whole pre-authorization thing. Well, in the meantime, she was getting worse, vomiting every time she ate anything.
So on Wednesday, the oncologist finally told her he couldn't really do anything else, other than put her in the hospital. By this point, she was ready to go to the hospital. So they admitted her.
They have done the CT scan, she has a massive infection in the half of her large intestine that she still has. She is on IV antibiotics (2 kinds) for at least a week, then they will re-evaluate. She may go a second week, or a third week, or a fourth week. The other option is to remove the rest of her large intestine, which she would really like to avoid.
This morning they attempted to do a colonoscopy, but were unable to do so, and had to settle for XRays of the area. So the surgeons and oncologist and GI doctors are consulting to decide if we should move the surgery up on the options list.
Pray for her, that the antibiotics will take care of everything. That she doesn't need surgery. Or that, if she does need the surgery, this will just fix everything. It's been a really stressful week, and month. And I don't live with it every day.
Pray for my dad, he is having a hard time with all this, as would any of us who had a spouse going through all this. I'll keep updating
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