Well, the last few days have been bad days - the kind I mentioned where Kathie mostly stays in bed and is pretty nauseous. Today, she couldn't get out of bed on her own, and she was too weak to even take a shower. She felt nauseous right away and spent part of the morning throwing up. Bob took her in to see Dr. Aklilu (I think they may have had an appointment scheduled today anyway) and got some IVs in her - she was very dehydrated. Blood tests showed elevated white blood cells - so she definitely has some sort of infection or virus and the z-pak wasn't cutting it, so they gave her stronger antibiotics. They also ran some x-rays as a precaution to make sure she doesn't have pneumonia or anything like that (we won't know those results until tomorrow, I believe). She did not have to stay in the hospital. After the tests and the IV, Bob took her back to the house.
The Dr.'s office will call if she needs to go back in, or they'll go back if the antibiotics don't seem to be turning things around... but besides that, she'll have a check-up next week.
A little bit of a bummer.
Posted by Lauren
Monday, March 3, 2008
Saturday, March 1, 2008
One appointment down, one canceled
When last we updated... Kathie had appointments at Duke and with one Dr. Buttar (homeopathic doc) set up. (sorry, not as fancy as the NBC 2 minute recaps, but it's all I've got).
The appointment with both Duke and the homeopathic doc got moved up. Kathie and Bob went to Duke to discuss clinical trials. As of now, it doesn't look like anything will open up for 3-4 weeks and at the moment, Kathie is not eligible because she's a big sluggish - but they hope to remedy that. Their opinion was that she was getting nauseous more often because her liver was inflamed - so they prescribed a strong anti-inflammatory to help reduce that. Kathie (aka Dr. DuCharme) had failed to mention she was spitting up some green (mucus) - hey, you wanted the details - and so they also put her on a Z-pak since she may have some minor infection. They also suggested to reduce her nausea to get her moving more quickly in the morning - getting something in her stomach early on and then having more snacks throughout the day. She also needs to be getting up more - so Bob and the rest of the fam have been working on keeping her up more and getting her to move around. Yesterday she had such a good day that she collected pine cones with the twins, unpacked some boxes with her sisters and went for a walk! The few days before that though, were not so good - nausea, tired, a little bit of a slug;) Hopefully, she's in for some more good days.
She'll go back in two weeks for a check up to see if she's on the right path to be a candidate and to see if one of the trials has opened up.
So what about our dear Dr. Buttar - the homeopathic guy? Well, something smelled rather fishy when Bob got letters about high payments (before even going) and Eddie found a blog informing us he was currently being sued for various issues surrounding his practice. Needless to say, the appointment has been canceled. We're looking into other homeopaths around the area, but it's hard to wipe that bad taste out of your mouth.
As for diet - Seinfeld had the soup nazi.... we have Christen, the veggie nazi - only, instead of not getting any, you don't get much else:) Seriously, Chris has been doing an amazing job of transforming Kathie's diet to fruits and veggies (she's following some diet plan I believe - I'll better update that when I'm in NC in a week), and the guests have also been enjoying her gourmet cooking. Eileen, Kathie's sister, was raving about the "ice cream" that was entirely fruit (no dairy or wheat on Kathie's diet, I believe).
** Again, friendly reminder to incoming guests: please defer to Christen on the diet plan. Though I'm sure a cooking break would be appreciated - it only is if it sticks with the plan. These kinds of diets are STRICT and it's like putting water into gasoline if something she's not supposed to have gets sneaked in (that's a word?! snuck isn't according to spell check). Your pot roast may be the best on this side of the Mississippi, but it has no place in a vegan diet;)
That being said, with all those fruits and veggies - I'm sure help with washing, chopping and grocery shopping would be greatly appreciated.
On another note, I did not mean to make it sound like we are closing ourselves off from more alternatives, trials, etc information if you have some. Eddie has searched clinicaltrials.gov for NC, TX and he found some in the Netherlands. If you find a clinical trial in your state that you think we should absolutely check out - please e-mail one of us the links to look into it. Also, we're open to the world, so if something looks that amazing (i.e. worth spending $1000s in plane tickets), let us know. We're currently not interested in anything that includes Camptosar, Avastin, Oxaliplatin - as these are drugs which have had no effect on Kathie and seem futile to keep returning to.
There is one book we are looking for - and if somebody already has it and would lend it to us... Sick and Tired... Reclaim Your Inner Terrain by Robert O. Young. I believe the diet we are trying to follow is in there - and we have a website summary, but clearly, the book would be more helpful.
P.S. If you are going to NC, Skybus has uber cheap tickets into GSO (Greensboro, the closest airport to the house) from Columbus, OH and I think Gary, IN (if you trust leaving your car there). I'm trying them for the first time next week... I'll let you know how it goes. I'm sure it gets to GSO from more airports, I'm just not sure which ones.
Posted by Lauren
The appointment with both Duke and the homeopathic doc got moved up. Kathie and Bob went to Duke to discuss clinical trials. As of now, it doesn't look like anything will open up for 3-4 weeks and at the moment, Kathie is not eligible because she's a big sluggish - but they hope to remedy that. Their opinion was that she was getting nauseous more often because her liver was inflamed - so they prescribed a strong anti-inflammatory to help reduce that. Kathie (aka Dr. DuCharme) had failed to mention she was spitting up some green (mucus) - hey, you wanted the details - and so they also put her on a Z-pak since she may have some minor infection. They also suggested to reduce her nausea to get her moving more quickly in the morning - getting something in her stomach early on and then having more snacks throughout the day. She also needs to be getting up more - so Bob and the rest of the fam have been working on keeping her up more and getting her to move around. Yesterday she had such a good day that she collected pine cones with the twins, unpacked some boxes with her sisters and went for a walk! The few days before that though, were not so good - nausea, tired, a little bit of a slug;) Hopefully, she's in for some more good days.
She'll go back in two weeks for a check up to see if she's on the right path to be a candidate and to see if one of the trials has opened up.
So what about our dear Dr. Buttar - the homeopathic guy? Well, something smelled rather fishy when Bob got letters about high payments (before even going) and Eddie found a blog informing us he was currently being sued for various issues surrounding his practice. Needless to say, the appointment has been canceled. We're looking into other homeopaths around the area, but it's hard to wipe that bad taste out of your mouth.
As for diet - Seinfeld had the soup nazi.... we have Christen, the veggie nazi - only, instead of not getting any, you don't get much else:) Seriously, Chris has been doing an amazing job of transforming Kathie's diet to fruits and veggies (she's following some diet plan I believe - I'll better update that when I'm in NC in a week), and the guests have also been enjoying her gourmet cooking. Eileen, Kathie's sister, was raving about the "ice cream" that was entirely fruit (no dairy or wheat on Kathie's diet, I believe).
** Again, friendly reminder to incoming guests: please defer to Christen on the diet plan. Though I'm sure a cooking break would be appreciated - it only is if it sticks with the plan. These kinds of diets are STRICT and it's like putting water into gasoline if something she's not supposed to have gets sneaked in (that's a word?! snuck isn't according to spell check). Your pot roast may be the best on this side of the Mississippi, but it has no place in a vegan diet;)
That being said, with all those fruits and veggies - I'm sure help with washing, chopping and grocery shopping would be greatly appreciated.
On another note, I did not mean to make it sound like we are closing ourselves off from more alternatives, trials, etc information if you have some. Eddie has searched clinicaltrials.gov for NC, TX and he found some in the Netherlands. If you find a clinical trial in your state that you think we should absolutely check out - please e-mail one of us the links to look into it. Also, we're open to the world, so if something looks that amazing (i.e. worth spending $1000s in plane tickets), let us know. We're currently not interested in anything that includes Camptosar, Avastin, Oxaliplatin - as these are drugs which have had no effect on Kathie and seem futile to keep returning to.
There is one book we are looking for - and if somebody already has it and would lend it to us... Sick and Tired... Reclaim Your Inner Terrain by Robert O. Young. I believe the diet we are trying to follow is in there - and we have a website summary, but clearly, the book would be more helpful.
P.S. If you are going to NC, Skybus has uber cheap tickets into GSO (Greensboro, the closest airport to the house) from Columbus, OH and I think Gary, IN (if you trust leaving your car there). I'm trying them for the first time next week... I'll let you know how it goes. I'm sure it gets to GSO from more airports, I'm just not sure which ones.
Posted by Lauren
Monday, February 25, 2008
Built trust?
Dear Readers,
I have heard bits and pieces from my advising council that some of our audience feels they can't trust the blog. While I admit to typing vaguely at times, I am not avoiding truths. As the youngest, I know how it feels to have incomplete information - but as I have grown up, I have also learned that there are reasons behind that (most of the time). Reasons some specifics have been avoided:
1). The information changes... we have no desire to have 30 people calling Kathie at the same time because she had a a fever of 103 which turns out to be from a cold... we may think she's neutropenic, but we don't want to present that to who knows how many people until we know if that is the actual information.
2). Too many cooks in the kitchen. We have/continually appreciate all of your thoughts, prayers and support... but we are at the point where we have collected A LOT of information (thanks to the help of many of you) and it is now up to Kathie and the immediate family to sift through this, and for Kathie to make the decision for herself about what she wants to do for the next step in this process. Until this decision is made, there is not a lot to say. If you really want to read an entry about the 10 different diets/alternative medicines and 15 clinical trials we are investigating, that can probably be arranged. (*These numbers are not accurate... just trying to make the point that there is a lot of info being passed via e-mail by our family and I am really hoping you do not ask for a post like that - it is tedious to sift through all of that!). Either way, please rest assure that we have looked into all sorts of alternative routes and clinicals being done around the world.
3). Positive attitude. The reality of the situation is hopefully clear to most of you - it's not sunshine and rainbows - Kathie made this clear in phone calls and letters. I did not feel it was necessary to repeat Dr. Eng's time estimate (made at her December appointment), especially since Dr. Aklilu has a much more positive approach - pointing out that none of us are God and we do not know when any of our time is up until He decides it.
I have tried to post links (more so at the beginning) for you to look into things further if you would like. Kathie could not/can not have liver resection, this was clear several months ago - and it reduces treatment options and life extension.
There is definitely those who believe that if you have a mental timeline, your body will start to follow that physically - so the more positive we can be (without being fake), the better.
4). Absorption time. Sometimes we hear some news, and we don't want to share it immediately, until we have time to absorb it, or until we have time to think about plan (what are we on? G? L?) or maybe just because we want some personal family time. The reason that the date of her check-up appointment was not posted was to avoid getting phone calls that evening to see how it went. I ended up posting on that day because Kathie had already told several people the date as had Lynette (to focus some prayer efforts)... but it was not easy to post that day, and again, it was difficult to decide how specific to be because nothing had been decided. Below is a clip from that post... brackets indicated further explanation:
What does that mean? Well, the cancer has grown and spread. There is some indication that it has spread outside of the liver now. [This was poor wordage - the cancer has spread outside the liver... it is in the cavity that holds the organs (there is some special name for that)... some indicative spots on the lung that were not there before, and some liquid in the lungs that they think is probably cancerous. (You may remember that she had fluid in there before - that was not cancerous, it was a side effect of the cancer most likely... this new fluid has a chance of not being cancer, but that will not be known until it has to be drained). However, despite the poor wordage of this - the extent of the spreading at the end of the day only mildly matters - the fact that the treatment was not working in general means that it is not good]
Bob, Kathie, Lynette, and Lauren talked with Dr. Aklilu about the next steps. A nurse representative for the clinical trial that is currently going on at Wake came in to chat with us while Dr. Aklilu set up an appointment for us at Duke to discuss their clinical trials there, and he also contacted Dr. Eng to see what's going on at MD Anderson. So that's where we are [Slight update: after discussing clinicals with MD Anderson, it was decided just to focus on those going on at Duke and Wake. The ones at MD Anderson are mostly new combinations of drugs Kathie has already tried... and it is a terrible inconvenience to have to do clinical trials that far away. Those at Duke and Wake are totally new. She has an appointment for Duke (this week) and a homeopathic doctor (mid March) coming up. Bob and her will be meeting with Dr. Aklilu next week to review what their options are to hopefully make some decisions about whether she will/what she will be pursuing. Christen has been looking into several cancer diet plans and alternative meds and bought out the cookbook section of the bookstore - though in Lexington, I'm not sure how big this section is;) j/k - she bought many books online and I have mailed her a couple of my books on raw foods. If you are eating with Kathie, please do not sneak her food - once they decide on which diet plan to follow, it will have to be strictly followed to make it worthwhile at all. ]
5). Game of telephone. I am in Muncie, Indiana - mom is in North Carolina. Bob e-mails/calls me, and I talk to Kathie on a regular basis, but there is a lot of technical stuff that gets lost in my brain that is also trying to balance my thesis project and school in general. I am doing the blogging because it's what I can contribute from far away, but I guess it has also created somewhat of a disadvantage for some of you because you may feel like some things are being left out. I apologize for that and will try to be a bit less vague.
6). Small changes. Kathie has cancer and takes vitamins, alternative meds (astragulus, CQ10... though I think she has stopped astragulus and we're trying other stuff), and pain meds.... she has good days and she has bad days. I am not going to post every time she sneezes (not to mention I don't know every time she sneezes). As a general rule... during the time that I am not posting, she will have a few off days which may include needing more pain meds, taking extra naps and occasionally vomiting. Good days are still slow moving, but she'll get out of the house, unpack the moving boxes, play sudoku and bridge in the paper, and talk on the phone - and if the grandkids are around, she plays with them. She has a constant stream of visitors. Janet (Bob's sister) just left, as did Kathie's brother and sister-in-law (Bill and Maureen), as did Bob's brother, Richard. Kathie's sisters, Eileen and Carole are there for a visit now.
Nothing has been decided about the next treatment step, so there is not much to say - the research and professional opinion collecting continues.
Again, I apologize if any of you have felt excluded. I suppose a general rule would be to assume it is probably slightly worse than I am typing because I am trying to keep everyone a little more upbeat - I am not lying, but I am maybe saying it in a more positive tone. Of course, if you call Kathie you are going to get more details... I can only write so much. On that note, please do not constantly call Kathie, thinking you are missing out, phone calls are nice, but too many/too long can also be very tiring and take away time with guests and family.
Thank you again for being a part of all of this with us. You are all very important to us, and we can't thank you enough for your support.
Love,
Lauren
I have heard bits and pieces from my advising council that some of our audience feels they can't trust the blog. While I admit to typing vaguely at times, I am not avoiding truths. As the youngest, I know how it feels to have incomplete information - but as I have grown up, I have also learned that there are reasons behind that (most of the time). Reasons some specifics have been avoided:
1). The information changes... we have no desire to have 30 people calling Kathie at the same time because she had a a fever of 103 which turns out to be from a cold... we may think she's neutropenic, but we don't want to present that to who knows how many people until we know if that is the actual information.
2). Too many cooks in the kitchen. We have/continually appreciate all of your thoughts, prayers and support... but we are at the point where we have collected A LOT of information (thanks to the help of many of you) and it is now up to Kathie and the immediate family to sift through this, and for Kathie to make the decision for herself about what she wants to do for the next step in this process. Until this decision is made, there is not a lot to say. If you really want to read an entry about the 10 different diets/alternative medicines and 15 clinical trials we are investigating, that can probably be arranged. (*These numbers are not accurate... just trying to make the point that there is a lot of info being passed via e-mail by our family and I am really hoping you do not ask for a post like that - it is tedious to sift through all of that!). Either way, please rest assure that we have looked into all sorts of alternative routes and clinicals being done around the world.
3). Positive attitude. The reality of the situation is hopefully clear to most of you - it's not sunshine and rainbows - Kathie made this clear in phone calls and letters. I did not feel it was necessary to repeat Dr. Eng's time estimate (made at her December appointment), especially since Dr. Aklilu has a much more positive approach - pointing out that none of us are God and we do not know when any of our time is up until He decides it.
I have tried to post links (more so at the beginning) for you to look into things further if you would like. Kathie could not/can not have liver resection, this was clear several months ago - and it reduces treatment options and life extension.
There is definitely those who believe that if you have a mental timeline, your body will start to follow that physically - so the more positive we can be (without being fake), the better.
4). Absorption time. Sometimes we hear some news, and we don't want to share it immediately, until we have time to absorb it, or until we have time to think about plan (what are we on? G? L?) or maybe just because we want some personal family time. The reason that the date of her check-up appointment was not posted was to avoid getting phone calls that evening to see how it went. I ended up posting on that day because Kathie had already told several people the date as had Lynette (to focus some prayer efforts)... but it was not easy to post that day, and again, it was difficult to decide how specific to be because nothing had been decided. Below is a clip from that post... brackets indicated further explanation:
What does that mean? Well, the cancer has grown and spread. There is some indication that it has spread outside of the liver now. [This was poor wordage - the cancer has spread outside the liver... it is in the cavity that holds the organs (there is some special name for that)... some indicative spots on the lung that were not there before, and some liquid in the lungs that they think is probably cancerous. (You may remember that she had fluid in there before - that was not cancerous, it was a side effect of the cancer most likely... this new fluid has a chance of not being cancer, but that will not be known until it has to be drained). However, despite the poor wordage of this - the extent of the spreading at the end of the day only mildly matters - the fact that the treatment was not working in general means that it is not good]
Bob, Kathie, Lynette, and Lauren talked with Dr. Aklilu about the next steps. A nurse representative for the clinical trial that is currently going on at Wake came in to chat with us while Dr. Aklilu set up an appointment for us at Duke to discuss their clinical trials there, and he also contacted Dr. Eng to see what's going on at MD Anderson. So that's where we are [Slight update: after discussing clinicals with MD Anderson, it was decided just to focus on those going on at Duke and Wake. The ones at MD Anderson are mostly new combinations of drugs Kathie has already tried... and it is a terrible inconvenience to have to do clinical trials that far away. Those at Duke and Wake are totally new. She has an appointment for Duke (this week) and a homeopathic doctor (mid March) coming up. Bob and her will be meeting with Dr. Aklilu next week to review what their options are to hopefully make some decisions about whether she will/what she will be pursuing. Christen has been looking into several cancer diet plans and alternative meds and bought out the cookbook section of the bookstore - though in Lexington, I'm not sure how big this section is;) j/k - she bought many books online and I have mailed her a couple of my books on raw foods. If you are eating with Kathie, please do not sneak her food - once they decide on which diet plan to follow, it will have to be strictly followed to make it worthwhile at all. ]
5). Game of telephone. I am in Muncie, Indiana - mom is in North Carolina. Bob e-mails/calls me, and I talk to Kathie on a regular basis, but there is a lot of technical stuff that gets lost in my brain that is also trying to balance my thesis project and school in general. I am doing the blogging because it's what I can contribute from far away, but I guess it has also created somewhat of a disadvantage for some of you because you may feel like some things are being left out. I apologize for that and will try to be a bit less vague.
6). Small changes. Kathie has cancer and takes vitamins, alternative meds (astragulus, CQ10... though I think she has stopped astragulus and we're trying other stuff), and pain meds.... she has good days and she has bad days. I am not going to post every time she sneezes (not to mention I don't know every time she sneezes). As a general rule... during the time that I am not posting, she will have a few off days which may include needing more pain meds, taking extra naps and occasionally vomiting. Good days are still slow moving, but she'll get out of the house, unpack the moving boxes, play sudoku and bridge in the paper, and talk on the phone - and if the grandkids are around, she plays with them. She has a constant stream of visitors. Janet (Bob's sister) just left, as did Kathie's brother and sister-in-law (Bill and Maureen), as did Bob's brother, Richard. Kathie's sisters, Eileen and Carole are there for a visit now.
Nothing has been decided about the next treatment step, so there is not much to say - the research and professional opinion collecting continues.
Again, I apologize if any of you have felt excluded. I suppose a general rule would be to assume it is probably slightly worse than I am typing because I am trying to keep everyone a little more upbeat - I am not lying, but I am maybe saying it in a more positive tone. Of course, if you call Kathie you are going to get more details... I can only write so much. On that note, please do not constantly call Kathie, thinking you are missing out, phone calls are nice, but too many/too long can also be very tiring and take away time with guests and family.
Thank you again for being a part of all of this with us. You are all very important to us, and we can't thank you enough for your support.
Love,
Lauren
Friday, February 15, 2008
when math doesn't work
Apparently, when it comes to pain patches, 25 + 25 does NOT equal 50... so there mathematicians! As we mentioned, Kathie's pain patch was upped this past week, to double (or 50)... or so we thought. Since Kathie still had some of the 25 patches, she decided to try to put two of those on (since the 50 micro something or another is a HUGE patch and the 25 is less than half its size)... turns out this is not a good solution. She overdosed a bit on the pain meds, got dizzy and nauseous, at which point they felt they had nothing to lose by removing those two and putting on the one ginomo (*yes, another one of Lauren's made-up words) patch. Just to double check though, Eddie made a call to Dr. Aklilu's nurse practitioner and found out that the two small patches did not equal the one larger one. Again, when we figure out why the math doesn't work here, we'll let you know. Pythagoras is rolling in his grave though, I assure you.
As for other "exciting" news... Lynette and her girls, Chris and Mom have been staying with Ed and Melissa for a few days while the last coat on the wood floors is airing out. Sophie and Kait were excited to rejoin their cousins (who they were sad to see go last Sunday). Emily is like a little mother-hen for them and it is adorable. Leigh (one of Kathie's friends), her son, Scott, and his girlfriend, Katie have come and gone within a few days last week. They were a great help at the house while they were there.
Alec has a bball game tomorrow morning, so Kathie hit the hay early this evening so she is ready to cheer tomorrow.
Posted by Lauren
As for other "exciting" news... Lynette and her girls, Chris and Mom have been staying with Ed and Melissa for a few days while the last coat on the wood floors is airing out. Sophie and Kait were excited to rejoin their cousins (who they were sad to see go last Sunday). Emily is like a little mother-hen for them and it is adorable. Leigh (one of Kathie's friends), her son, Scott, and his girlfriend, Katie have come and gone within a few days last week. They were a great help at the house while they were there.
Alec has a bball game tomorrow morning, so Kathie hit the hay early this evening so she is ready to cheer tomorrow.
Posted by Lauren
Monday, February 11, 2008
Not our mantra
So, you can keep that "3rd try's a charm" mantra for learning to ride a bike, in-line skating or perhaps even baking bread... but it apparently has no place in a cancer center - at least not for Kathie. Looks like 20% is even too big of a percentage for her to try to squeak in, so we're going to go for something even more out there - clinical trials. Kathie wants to really make sure that someone gets credit for a miracle.
Kathie has an Erbitux rash that appeared this past week on her face and has been experiencing pain despite the pain patch. At her appointment with Dr. Aklilu today, he suggested upping the dosage on the pain patch and we talked about her poop some more - no meeting is complete without it!
So if you haven't caught on... Kathie had her 2 month scans today to see if the "new" Camptosar and Erbitux treatment were working.
Unfortunately, when Dr. Aklilu got to the part where we discussed what the scans showed in relationship to how her chemo is going - he also started his sentence with "unfortunately..."
What does that mean? Well, the cancer has grown and spread. There is some indication that it has spread outside of the liver now.
Lynette and Lauren sat in on the appointment while "Uncle Ben" and Aunt Christen watched the Care Bears with Soph and Kait who seemed to really be enjoying the endless supply of apple juice.
Bob, Kathie, Lynette, and Lauren talked with Dr. Aklilu about the next steps. A nurse representative for the clinical trial that is currently going on at Wake came in to chat with us while Dr. Aklilu set up an appointment for us at Duke to discuss their clinical trials there, and he also contacted Dr. Eng to see what's going on at MD Anderson. So that's where we are.
Kathie seemed to be pretty positive throughout the conversation and asked a lot of questions and when we met back up with the rest of the gang, even let Soph and Kait talk her into tickling Aunt Christen for them.
We gave her the scrapbook yesterday as her Valentine's Day gift - and she loved it. The kids all loved looking at it with her and seeing grandma when she was younger. All four of the grandkids made pages as well - which was pretty freaking cute. When Kathie puts on her glasses, I'm sure she'll appreciate the scrapbook even more;) Thanks for helping Lauren get that together. Again, if you weren't able to send something in, but still wanted to, go ahead and send it still - it will get in there.
The house in Lexington got all the beds set up yesterday (thanks to the whole clan being there plus Ben and his dad, Mike). Melissa brought a rocking lunch - man, if you've had her cheesy potatoes, you would know what I mean... and Betsy (Ben's mom) added some sides for dinner... green bean casserole, baked beans and her famous chocolate chip cookies.
There was working water and electricity... a permanent C.O. is supposedly happening within the next day or so.
Keep the prayers coming as we head into yet another decision process.
Posted by Lauren
Kathie has an Erbitux rash that appeared this past week on her face and has been experiencing pain despite the pain patch. At her appointment with Dr. Aklilu today, he suggested upping the dosage on the pain patch and we talked about her poop some more - no meeting is complete without it!
So if you haven't caught on... Kathie had her 2 month scans today to see if the "new" Camptosar and Erbitux treatment were working.
Unfortunately, when Dr. Aklilu got to the part where we discussed what the scans showed in relationship to how her chemo is going - he also started his sentence with "unfortunately..."
What does that mean? Well, the cancer has grown and spread. There is some indication that it has spread outside of the liver now.
Lynette and Lauren sat in on the appointment while "Uncle Ben" and Aunt Christen watched the Care Bears with Soph and Kait who seemed to really be enjoying the endless supply of apple juice.
Bob, Kathie, Lynette, and Lauren talked with Dr. Aklilu about the next steps. A nurse representative for the clinical trial that is currently going on at Wake came in to chat with us while Dr. Aklilu set up an appointment for us at Duke to discuss their clinical trials there, and he also contacted Dr. Eng to see what's going on at MD Anderson. So that's where we are.
Kathie seemed to be pretty positive throughout the conversation and asked a lot of questions and when we met back up with the rest of the gang, even let Soph and Kait talk her into tickling Aunt Christen for them.
We gave her the scrapbook yesterday as her Valentine's Day gift - and she loved it. The kids all loved looking at it with her and seeing grandma when she was younger. All four of the grandkids made pages as well - which was pretty freaking cute. When Kathie puts on her glasses, I'm sure she'll appreciate the scrapbook even more;) Thanks for helping Lauren get that together. Again, if you weren't able to send something in, but still wanted to, go ahead and send it still - it will get in there.
The house in Lexington got all the beds set up yesterday (thanks to the whole clan being there plus Ben and his dad, Mike). Melissa brought a rocking lunch - man, if you've had her cheesy potatoes, you would know what I mean... and Betsy (Ben's mom) added some sides for dinner... green bean casserole, baked beans and her famous chocolate chip cookies.
There was working water and electricity... a permanent C.O. is supposedly happening within the next day or so.
Keep the prayers coming as we head into yet another decision process.
Posted by Lauren
Thursday, January 31, 2008
A Bit Behind
Sorry this is being put up a bit late. Kathie had treatment on Monday and also her bi-monthly meeting with Dr. Aklilu (is it bi-monthly or bi-weekly... she meets with him every other week would be the point).
Dr. Aklilu feels that her fatigue and pain could be from either the cancer growing OR from the cancer responding to the chemo - nice political answer, and probably just what Kathie needed to hear as she occasionally has been slipping into the pessimistic side of things.
He also felt that she has been living with an amount of pain that has demonstrateably (yep, made up word - so says spell check ) been affecting her quality of life (she's been too tired to do much and her appetite has dipped pretty low). To remedy this situation, he has asked her to wear a pain patch on a regular basis. Initially after putting it on, she felt great... and then all the drugs in her system caught up with her and Wednesday morning she spent throwing up and feeling loopy. Things have balanced back out, and she seems to be benefiting greatly from this new addition to "treatment."
Dr. Aklilu has also asked her to take pepcid regularly to control some heartburn issues. She's been getting a dry scalp due to the Erbitux and he suggested something like Selsun Blue or similar to help that - oh, if only every solution came in a $2.99 blue bottle!
On another note, due to the lowering appetite, Kathie continues to stay at a lower weight than ideal and we've been trying to think of brilliant and healthy ways to add some calories. If anyone has some high calorie suggestions that do not include sugar or artificial sugar, shoot Lauren an e-mail: laducharme@bsu.edu
Last, SCRAPBOOK - Lauren is hitching a ride from Bob on the 9th down to NC... the book is going down with her to give as an early Valentine's Day present. If you are planning on your page being in there when she gets it, please get it in the mail by Monday so Lauren can get it together. Also, please make sure your name(s) is/are on it somewhere:) The stories and letters have been great (not that I'm reading them;) ) - if you want to write a longer letter than will fit on the page, there is no shame in attaching an envelop to the sheet - the top of the scrapbook pages are open, so it can easily be slipped out for viewing.
Don't forget to mail everything to Lauren's school address - e-mail the above address if you need the apartment address.
Thanks to those who have already sent the pages, I think she'll be very touched by your pages... and thank you to those who almost have it ready to pop in the mail (right???)..... and thank you to those who at least are reading the blog and praying for her:) All of you are amazing and your concern for Kathie and the family is deeply touching to all of us.
oooh... speaking of family, in a little over a week, the DuCharme family will be reunited for the second time in a year!!! (unprecedented since Christen headed to the sunny island life) - Christen is on the mainland as of today and back with Bob and Kathie next week. Lynette will be making a visit to NC around the same time as Lauren (though is lucky enough to stay for a couple of weeks... ) I believe the children were somehow tricked into helping unpack and set up the Lexington house - oh, I think it was with gentle reminders of how Bob and Kathie had paid for colleges, credit card bills while in college, put food on the table, made sure no one fell into the Grand Canyon, etc. :) Parent card, works every time!
Posted by Lauren
Dr. Aklilu feels that her fatigue and pain could be from either the cancer growing OR from the cancer responding to the chemo - nice political answer, and probably just what Kathie needed to hear as she occasionally has been slipping into the pessimistic side of things.
He also felt that she has been living with an amount of pain that has demonstrateably (yep, made up word - so says spell check ) been affecting her quality of life (she's been too tired to do much and her appetite has dipped pretty low). To remedy this situation, he has asked her to wear a pain patch on a regular basis. Initially after putting it on, she felt great... and then all the drugs in her system caught up with her and Wednesday morning she spent throwing up and feeling loopy. Things have balanced back out, and she seems to be benefiting greatly from this new addition to "treatment."
Dr. Aklilu has also asked her to take pepcid regularly to control some heartburn issues. She's been getting a dry scalp due to the Erbitux and he suggested something like Selsun Blue or similar to help that - oh, if only every solution came in a $2.99 blue bottle!
On another note, due to the lowering appetite, Kathie continues to stay at a lower weight than ideal and we've been trying to think of brilliant and healthy ways to add some calories. If anyone has some high calorie suggestions that do not include sugar or artificial sugar, shoot Lauren an e-mail: laducharme@bsu.edu
Last, SCRAPBOOK - Lauren is hitching a ride from Bob on the 9th down to NC... the book is going down with her to give as an early Valentine's Day present. If you are planning on your page being in there when she gets it, please get it in the mail by Monday so Lauren can get it together. Also, please make sure your name(s) is/are on it somewhere:) The stories and letters have been great (not that I'm reading them;) ) - if you want to write a longer letter than will fit on the page, there is no shame in attaching an envelop to the sheet - the top of the scrapbook pages are open, so it can easily be slipped out for viewing.
Don't forget to mail everything to Lauren's school address - e-mail the above address if you need the apartment address.
Thanks to those who have already sent the pages, I think she'll be very touched by your pages... and thank you to those who almost have it ready to pop in the mail (right???)..... and thank you to those who at least are reading the blog and praying for her:) All of you are amazing and your concern for Kathie and the family is deeply touching to all of us.
oooh... speaking of family, in a little over a week, the DuCharme family will be reunited for the second time in a year!!! (unprecedented since Christen headed to the sunny island life) - Christen is on the mainland as of today and back with Bob and Kathie next week. Lynette will be making a visit to NC around the same time as Lauren (though is lucky enough to stay for a couple of weeks... ) I believe the children were somehow tricked into helping unpack and set up the Lexington house - oh, I think it was with gentle reminders of how Bob and Kathie had paid for colleges, credit card bills while in college, put food on the table, made sure no one fell into the Grand Canyon, etc. :) Parent card, works every time!
Posted by Lauren
Thursday, January 24, 2008
A little off
Lauren and Kathie enjoyed a nice weekend together. Kathie picked Lauren up from the airport on Saturday and went almost straight to a bridal shop appointment at a schmancy place. Surprisingly, they did not decide to buy the $5,000 dress;) They had a short appointment so they could make it to Alec's basketball game (which was pretty great for 7 and 8 year olds!). Alec's team won by 4 points.
Saturday continued to be busy - after a VERY quick bite to eat, Kathie and Lauren headed to the tile shop to finalize some things for the Lexington house. After that they went to David's Bridal - neither of them thought this was ideal, and the service was chaotic and pressured as they expected... however, Lauren found "the dress." Not wanting to make a compulsive buy, they made an appointment for Sunday and returned with the entourage (Melissa, Emily, Bob and Ben's sister, Liz). They bought the dress on Sunday.
Not surprisingly, Kathie was a bit pooped after a day of running around, but her spirits were good. Sunday, after they bought the dress, Lauren left for Winston-Salem to see Ben and his family, and Bob and Kathie joined them later that evening.
Kathie and Lauren looked at the church Monday afternoon before heading to go look at reception places. Again, by the time Lauren and Kathie made it back to Apex, Kathie was a bit tired, but after a quick nap and dinner was ready to hit the movies with Lauren. They went and saw 27 Dresses (definitely a chick flick, but cute). Since Bob had left for home, Lauren slept in Kathie's room and they got up early to head to the airport on Tuesday.
Lauren flew out Tuesday, and Kathie made the second trip this week to Winston with Eddie to go get her Erbitux treatment. The benedryl knocked Kathie out shortly after they started. Wednesday she woke up feeling a bit off and ended up taking an hour and half nap in the afternoon.
Lately, she's been having a few more aches and pains (shoulder, back, a bit of nausea, some shortness of breath occasionally and a rapid heart beat once in awhile). Overall though, she says she hasn't been feeling too bad - the fatigue is still what is slowing her down. The next month will probably add to that, as the house is finalized in Lexington. There are hopes to sleep in the new house before mid-February (keep your fingers crossed!). Since they will need some things in the new house, Lauren is meeting Bob and Kathie in Lafayette in a couple of weeks to pack up some of the house. Christen will be coming the next week to help continue the process.
Kathie is starting to lose her hair again, but it is not obvious yet on her head - it's still pretty full.
Posted by Lauren
Saturday continued to be busy - after a VERY quick bite to eat, Kathie and Lauren headed to the tile shop to finalize some things for the Lexington house. After that they went to David's Bridal - neither of them thought this was ideal, and the service was chaotic and pressured as they expected... however, Lauren found "the dress." Not wanting to make a compulsive buy, they made an appointment for Sunday and returned with the entourage (Melissa, Emily, Bob and Ben's sister, Liz). They bought the dress on Sunday.
Not surprisingly, Kathie was a bit pooped after a day of running around, but her spirits were good. Sunday, after they bought the dress, Lauren left for Winston-Salem to see Ben and his family, and Bob and Kathie joined them later that evening.
Kathie and Lauren looked at the church Monday afternoon before heading to go look at reception places. Again, by the time Lauren and Kathie made it back to Apex, Kathie was a bit tired, but after a quick nap and dinner was ready to hit the movies with Lauren. They went and saw 27 Dresses (definitely a chick flick, but cute). Since Bob had left for home, Lauren slept in Kathie's room and they got up early to head to the airport on Tuesday.
Lauren flew out Tuesday, and Kathie made the second trip this week to Winston with Eddie to go get her Erbitux treatment. The benedryl knocked Kathie out shortly after they started. Wednesday she woke up feeling a bit off and ended up taking an hour and half nap in the afternoon.
Lately, she's been having a few more aches and pains (shoulder, back, a bit of nausea, some shortness of breath occasionally and a rapid heart beat once in awhile). Overall though, she says she hasn't been feeling too bad - the fatigue is still what is slowing her down. The next month will probably add to that, as the house is finalized in Lexington. There are hopes to sleep in the new house before mid-February (keep your fingers crossed!). Since they will need some things in the new house, Lauren is meeting Bob and Kathie in Lafayette in a couple of weeks to pack up some of the house. Christen will be coming the next week to help continue the process.
Kathie is starting to lose her hair again, but it is not obvious yet on her head - it's still pretty full.
Posted by Lauren
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