I finally saw a physical therapist yesterday and she confirmed what I pretty much had already figured out... my left foot is mostly useless at this point. Walking has become REALLY hard lately and it's been keeping me from doing a lot of things that I normally wouldn't think twice about. The other day I was SLOWLY making my way to my car in the Costco parking lot and this cart-getter-boy offered to carry me to my car :) How cute is that? Anyway, that should give you an idea how very obvious my disability is now (not to mention what a hottie I've managed to stay throughout this whole ordeal, lol!)
The good news is that the physical therapist hooked me up with a brace that has me up and running (figuratively speaking) again :) It is a single piece of hard plastic that runs from the ball of my foot, up the back of my ankle and almost up to the back of my knee where it has a velcro strap that goes around my calf. It really helps me keep my ankle flexed and toes up so that they aren't dragging anymore. I actually went for a little walk around my apartment complex last night and am practicing how to walk normally again. After 2 months of limping, my hips don't know what the heck is going on! I think after a little more practice I should be walking like a big girl again :)
So I have tickets to watch the Giants beat the Dodgers tonight, and I was very tempted to cancel on my friends I'm going with because there's so much walking involved in going to a game, but I think I can do it now :) With my new wheels, I feel a lot more confident about getting around!
I'll try to write again later this week, but if not I will definitely post after my appointment next Monday with my oncologist when I'll be getting the results of the MRI I had 2 days ago. This is my first MRI since starting on my new medication, and it will pretty much let us know if the medication is working or if we'll have to move on to plan... what are we on now... D? E? Keep your fingers crossed for me... I'm pretty scared about this one.
Hugs & kisses to you all :)
Laurie
Wednesday, September 15, 2010
Tuesday, September 7, 2010
Happy Labor Day :)
Hi Everyone!
I hope you all had a nice, relaxing Labor Day weekend :) I went to Fiddletown (big surprise) for a couple nights and enjoyed the slightly cooler weather than we've been having in Sac and the amazingly beautiful nights. Horch (my adorable dog for those of you not familiar with him) absolutely loves it up there. It's just about the only place I'll let him off a leash so he gets to go hunting out piles of deer poop to feast on. I try to discourage it, but apparently it's a real delicacy. I've heard that it is a favorite appetizer from many other dog owners. A few weeks ago I had Horch shaved so that his hair is really short now and he looks like a little puppy. I'll post a picture soon, but I don't have one right now... my camera's not working :(
I had my 3rd treatment of Avastin today. Everything went just fine again. I'm not real fond of the IV's, but I guess I can put up with it if this stuff is working. Speaking of that, I have an MRI scheduled for next Monday and an appointment with my doctor for the following Monday, 9/20 to get the results of the MRI to see if it has had any affect on my tumor. I'm super crazy nervous about it, but I'm trying not to worry about it and just keeping myself busy. My leg hasn't gotten any better, but it also hasn't gotten any worse. My oncologist just referred me to the physical therapy department so they can hopefully get me some kind of brace and teach me some exercises to keep my leg as strong as possible. I'm SUPER clumsy and kinda look drunk when I walk, but I think a brace that can help me flex my foot would really help my stumbling. I'm also thinking about getting a pimped out cane to make me more stable... something Snoop Dogg style with a cool brass handle and maybe a snake design carved into the shaft. On second thought, since I'm moving to Fiddletown, maybe it would be more appropriate if I whittled it myself while smoking a corn cob pipe .
Quick update on the boys, Mason & Skyler. They are now moved into their apartment in Davis and are trying to get used to the overwhelming amount of homework that comes along with college. We never made it past the fried eggs in terms of cooking lessons, but I kinda invited myself over this Thursday to finally make that curry dish with them. I'm pretty sure Mason will like it, he loves Indian food, but I'm not sure about Skyler, I'm thinking he's not super fond of veggies... I guess we'll find out! Apparently Mason has already been practicing some cooking on his own and it sounds like he's determined to become a great cook. He just needs a few pointers, but he's a very willing student. I'm so proud of him!
Ok, once again, it's past my bedtime. Horch is already snoring, so that usually let's me know that it's time to turn the lights off.
Hugs & kisses to everyone!
Laurie
I hope you all had a nice, relaxing Labor Day weekend :) I went to Fiddletown (big surprise) for a couple nights and enjoyed the slightly cooler weather than we've been having in Sac and the amazingly beautiful nights. Horch (my adorable dog for those of you not familiar with him) absolutely loves it up there. It's just about the only place I'll let him off a leash so he gets to go hunting out piles of deer poop to feast on. I try to discourage it, but apparently it's a real delicacy. I've heard that it is a favorite appetizer from many other dog owners. A few weeks ago I had Horch shaved so that his hair is really short now and he looks like a little puppy. I'll post a picture soon, but I don't have one right now... my camera's not working :(
I had my 3rd treatment of Avastin today. Everything went just fine again. I'm not real fond of the IV's, but I guess I can put up with it if this stuff is working. Speaking of that, I have an MRI scheduled for next Monday and an appointment with my doctor for the following Monday, 9/20 to get the results of the MRI to see if it has had any affect on my tumor. I'm super crazy nervous about it, but I'm trying not to worry about it and just keeping myself busy. My leg hasn't gotten any better, but it also hasn't gotten any worse. My oncologist just referred me to the physical therapy department so they can hopefully get me some kind of brace and teach me some exercises to keep my leg as strong as possible. I'm SUPER clumsy and kinda look drunk when I walk, but I think a brace that can help me flex my foot would really help my stumbling. I'm also thinking about getting a pimped out cane to make me more stable... something Snoop Dogg style with a cool brass handle and maybe a snake design carved into the shaft. On second thought, since I'm moving to Fiddletown, maybe it would be more appropriate if I whittled it myself while smoking a corn cob pipe .
Quick update on the boys, Mason & Skyler. They are now moved into their apartment in Davis and are trying to get used to the overwhelming amount of homework that comes along with college. We never made it past the fried eggs in terms of cooking lessons, but I kinda invited myself over this Thursday to finally make that curry dish with them. I'm pretty sure Mason will like it, he loves Indian food, but I'm not sure about Skyler, I'm thinking he's not super fond of veggies... I guess we'll find out! Apparently Mason has already been practicing some cooking on his own and it sounds like he's determined to become a great cook. He just needs a few pointers, but he's a very willing student. I'm so proud of him!
Ok, once again, it's past my bedtime. Horch is already snoring, so that usually let's me know that it's time to turn the lights off.
Hugs & kisses to everyone!
Laurie
Monday, August 23, 2010
Treatment #2
Mom & I just got home from a doctors appointment and my 2nd treatment of Avastin. It went just as well as the first and I'm feeling no side effects from it ;-) I'll be having my 3rd treatment in 2 weeks, then an MRI shortly after that. That's when we will know if this new medication is working to stop my tumor's growth or perhaps even shrink it. I'm feeling fairly confident about it since my symptoms haven't gotten any worse, no better, but no worse either. I'm happy with stable at this point!
I have a couple roommates for the next week and a half :) My 18 year old nephew, Mason and his friend, Skyler, are staying with me because they started school at American River College today, but don't get their apartment in Davis until September 2nd or 3rd. I'm taking on the task of teaching them how to cook for themselves (something other than hot pockets) because I know my mom and sister are both convinced they're going to starve to death. This morning we tackled fried eggs and toast and they both did really well :) My mom, the boys and I are going out for pizza tonight to celebrate their 1st day of college and a good doc appt for me. I think tomorrow night I'm going to teach them a really simple curry dish I know (thanks Toggi & Kirk!) because Skyler is a vegetarian and it is a great one to make with tofu, plus it's really yummy.
If anyone is interested in the recipe, here you go...
Makes 2 Servings (with some leftovers)
Ingredients:
*1 can coconut milk (16 oz, I think), can substitute light coconut milk
*1 Tbsp "Mae Ploy" red curry paste (found in Asian grocery stores, other curry paste would probably work too)
*1 Tbsp chicken bouillon (I'm going to try to find veggie bouillon for Skyler)
*1 Tbsp sugar
*Canned Asian veggies (drained) of your choice (water chestnuts, bamboo shoots, straw mushrooms, baby corn, etc.) About 1/2 can of each. Cut baby corn and bamboo shoots into bite size pieces.
*1/2 red bell pepper, cut into bite size pieces
*1 package extra firm tofu or shrimp or chicken cut into bite size pieces
*1 bag 10-minute "boil in a bag" brown rice
Sooo easy...
Pour coconut milk into a medium saucepan. Add curry paste, bouillon & sugar, stir & let simmer, covered, about 30-40 minutes, until curry paste as broken down and color of the coconut milk has turned red. Bring another pot of water to a rolling boil and add brown rice. Set timer for 10 minutes. Add drained canned veggies to coconut milk. Add tofu, shrimp or chicken & let simmer again, about 10-15 minutes if using tofu or chicken (until chicken is cooked) and about 3-4 minutes if using shrimp. Add red bell pepper and frozen peas and simmer for another couple minutes. Drain rice when timer goes off. All done!
Serve curry mixture on top of rice & enjoy!
Let me know how it comes out or if you have any questions or suggestions =D
XOXO,
~LG
I have a couple roommates for the next week and a half :) My 18 year old nephew, Mason and his friend, Skyler, are staying with me because they started school at American River College today, but don't get their apartment in Davis until September 2nd or 3rd. I'm taking on the task of teaching them how to cook for themselves (something other than hot pockets) because I know my mom and sister are both convinced they're going to starve to death. This morning we tackled fried eggs and toast and they both did really well :) My mom, the boys and I are going out for pizza tonight to celebrate their 1st day of college and a good doc appt for me. I think tomorrow night I'm going to teach them a really simple curry dish I know (thanks Toggi & Kirk!) because Skyler is a vegetarian and it is a great one to make with tofu, plus it's really yummy.
If anyone is interested in the recipe, here you go...
Makes 2 Servings (with some leftovers)
Ingredients:
*1 can coconut milk (16 oz, I think), can substitute light coconut milk
*1 Tbsp "Mae Ploy" red curry paste (found in Asian grocery stores, other curry paste would probably work too)
*1 Tbsp chicken bouillon (I'm going to try to find veggie bouillon for Skyler)
*1 Tbsp sugar
*Canned Asian veggies (drained) of your choice (water chestnuts, bamboo shoots, straw mushrooms, baby corn, etc.) About 1/2 can of each. Cut baby corn and bamboo shoots into bite size pieces.
*1/2 red bell pepper, cut into bite size pieces
*1 package extra firm tofu or shrimp or chicken cut into bite size pieces
*1 bag 10-minute "boil in a bag" brown rice
Sooo easy...
Pour coconut milk into a medium saucepan. Add curry paste, bouillon & sugar, stir & let simmer, covered, about 30-40 minutes, until curry paste as broken down and color of the coconut milk has turned red. Bring another pot of water to a rolling boil and add brown rice. Set timer for 10 minutes. Add drained canned veggies to coconut milk. Add tofu, shrimp or chicken & let simmer again, about 10-15 minutes if using tofu or chicken (until chicken is cooked) and about 3-4 minutes if using shrimp. Add red bell pepper and frozen peas and simmer for another couple minutes. Drain rice when timer goes off. All done!
Serve curry mixture on top of rice & enjoy!
Let me know how it comes out or if you have any questions or suggestions =D
XOXO,
~LG
Wednesday, August 18, 2010
Hiya,
So, my latest news... I was "retired" on Friday, the 13th (how appropriate, huh?). Actually, I was totally expecting this, and was actually planning on quitting within a couple weeks. My work and I had been very honest with each other. I was still working through a temp agency and I knew that they could not hire me under the circumstances. No hard feelings :)
I gave my notice to my apartment complex today, so I will be moving to Fiddletown within the next few weeks, yahooooo! I will be applying for State disability and Social Security, so I will still have a little income, which I'm planning on using to travel and enjoy my retirement :) Fiddletown is like a mini vacation for me, so I'm looking forward to moving there. Though, I am still a city girl, so any temptations to visit friends & family in the civilized/Target-having world would be more than welcome :)
Horch got a new haircut today, a la Fiddletown. We found that his long hair DOES NOT work in Fiddletown, with him coming home after going potty with HUNDREDS of burrs stuck in his hair. I had him shaved today, but he looks pretty adorable. I'll see if I can post a super cute picture of him on my next blog.
My next treatment and doc appt is on Monday, 8/23, so if I don't post before then, I will let you all know how if goes :)
XOXO,
~LG
So, my latest news... I was "retired" on Friday, the 13th (how appropriate, huh?). Actually, I was totally expecting this, and was actually planning on quitting within a couple weeks. My work and I had been very honest with each other. I was still working through a temp agency and I knew that they could not hire me under the circumstances. No hard feelings :)
I gave my notice to my apartment complex today, so I will be moving to Fiddletown within the next few weeks, yahooooo! I will be applying for State disability and Social Security, so I will still have a little income, which I'm planning on using to travel and enjoy my retirement :) Fiddletown is like a mini vacation for me, so I'm looking forward to moving there. Though, I am still a city girl, so any temptations to visit friends & family in the civilized/Target-having world would be more than welcome :)
Horch got a new haircut today, a la Fiddletown. We found that his long hair DOES NOT work in Fiddletown, with him coming home after going potty with HUNDREDS of burrs stuck in his hair. I had him shaved today, but he looks pretty adorable. I'll see if I can post a super cute picture of him on my next blog.
My next treatment and doc appt is on Monday, 8/23, so if I don't post before then, I will let you all know how if goes :)
XOXO,
~LG
Tuesday, August 10, 2010
Piece of Cake ;-D
Hi everyone,
So I had my first treatment of Avastin yesterday. My mom went with me for support and to keep me company while going through my first IV cancer treatment. Luckily, it went just like my doctor, the nurses and my friend who is taking Avastin said... total piece of cake. I had NO side effects and even the IV didn't hurt nearly as bad as others I've had. The nurses were totally awesome and, other than feeling bad for the older folks who were having a much more difficult time with their chemo, it was an almost enjoyable experience.
We also learned something new that I thought was pretty interesting. I had been told that Avastin isn't actually considered chemotherapy, but I didn't know what classified something as chemo vs. not chemo. I'll probably get this kinda wrong, but this is how I understand it. Apparently, chemo is a type of drug that attacks all rapidly growing cells in your body. Tumors are groups of rapidly growing cells, but so are hair cells, the lining of your esophagus, and your bone marrow. Therefore, in addition to attacking the tumor cells, it also kills your hair cells (making your hair fall out), the cells lining your esophagus (causing nausea) and the cells in your bones, where your white and red blood cells are made (causing fatigue from low red blood cells counts and a weakened immune system from low white blood cell counts). The amazing thing about Avastin is that it works differently. It "inhibit(s) angiogenesis, the process by which new blood vessels develop and carry vital nutrients to a tumor." (Science Daily, 4/14/09) So basically, it cuts off the tumor's food, starving it to death, rather than attacking the tumor itself. I just think that's really cool :)
My doc at UCSF said that, after having Avastin treatments for 6 weeks, if my MRI at that time shows my tumor/adema have either stabilized or (hopefully) shrunk, then he'd like to schedule me to do it for a year, with treatments every 2 weeks. This new reality has been almost more than I can take, in a good way :) It has given me fresh hope when I honestly thought there was none. I still need to be realistic and accept the fact that I have a brain tumor that has begun growing twice now, but at least it appears that I will be able to make some new plans for the future and spend quality time with my loved ones.
My left leg is still partially paralysed and I kinda hobble around all gimpy, but I figure if I can laugh at myself, it makes it much less frustrating. A few months ago I signed up to walk a half-marathon in SF in October & would love to still be able to do it. I might be the last person to cross the finish line because I'm REALLY slow these days, but that'd be a pretty cool accomplishment :) I'm really hoping that my new medicine might shrink the tumor and/or adema enough that I will get full control over my leg again, but I'm not counting on it. This is just my new reality.
I hope you all are doing well & I'm sending my love and appreciation out to my awesome support network. I'm a lucky girl to have you all in my life!
XOXO,
Laurie
So I had my first treatment of Avastin yesterday. My mom went with me for support and to keep me company while going through my first IV cancer treatment. Luckily, it went just like my doctor, the nurses and my friend who is taking Avastin said... total piece of cake. I had NO side effects and even the IV didn't hurt nearly as bad as others I've had. The nurses were totally awesome and, other than feeling bad for the older folks who were having a much more difficult time with their chemo, it was an almost enjoyable experience.
We also learned something new that I thought was pretty interesting. I had been told that Avastin isn't actually considered chemotherapy, but I didn't know what classified something as chemo vs. not chemo. I'll probably get this kinda wrong, but this is how I understand it. Apparently, chemo is a type of drug that attacks all rapidly growing cells in your body. Tumors are groups of rapidly growing cells, but so are hair cells, the lining of your esophagus, and your bone marrow. Therefore, in addition to attacking the tumor cells, it also kills your hair cells (making your hair fall out), the cells lining your esophagus (causing nausea) and the cells in your bones, where your white and red blood cells are made (causing fatigue from low red blood cells counts and a weakened immune system from low white blood cell counts). The amazing thing about Avastin is that it works differently. It "inhibit(s) angiogenesis, the process by which new blood vessels develop and carry vital nutrients to a tumor." (Science Daily, 4/14/09) So basically, it cuts off the tumor's food, starving it to death, rather than attacking the tumor itself. I just think that's really cool :)
My doc at UCSF said that, after having Avastin treatments for 6 weeks, if my MRI at that time shows my tumor/adema have either stabilized or (hopefully) shrunk, then he'd like to schedule me to do it for a year, with treatments every 2 weeks. This new reality has been almost more than I can take, in a good way :) It has given me fresh hope when I honestly thought there was none. I still need to be realistic and accept the fact that I have a brain tumor that has begun growing twice now, but at least it appears that I will be able to make some new plans for the future and spend quality time with my loved ones.
My left leg is still partially paralysed and I kinda hobble around all gimpy, but I figure if I can laugh at myself, it makes it much less frustrating. A few months ago I signed up to walk a half-marathon in SF in October & would love to still be able to do it. I might be the last person to cross the finish line because I'm REALLY slow these days, but that'd be a pretty cool accomplishment :) I'm really hoping that my new medicine might shrink the tumor and/or adema enough that I will get full control over my leg again, but I'm not counting on it. This is just my new reality.
I hope you all are doing well & I'm sending my love and appreciation out to my awesome support network. I'm a lucky girl to have you all in my life!
XOXO,
Laurie
Saturday, August 7, 2010
Avastin, here I come...
Hi again!
Just a quick note to let you know that I am having my first IV drip of Avastin on Monday 8/9/10 and Mom's going to come stay with me to make sure I can handle it. Apparently this stuff isn't considered chemo and should have few side effects. I've talked a little with an old friend from high school who is also going to UCSF for a brain tumor that she was diagnosed with about 10 months ago and she is in a clinical trial using Avastin and a couple other drugs. She said that the Avastin is the easiest on her and that if that was all that she had to do, it would be no problem. Unfortunately, it sounds like the other drugs have been less than kind to her body. She is a wonderful person and has a loving husband and son. Please keep her and her family in your thoughts as well. I'll let you all know how it goes on Monday.
On a lighter note, I had the world's most relaxing pedicure today and my toes look fantastic :) I'm starting to understand the healing benefits of being pampered!
XOXO,
Laurie
Just a quick note to let you know that I am having my first IV drip of Avastin on Monday 8/9/10 and Mom's going to come stay with me to make sure I can handle it. Apparently this stuff isn't considered chemo and should have few side effects. I've talked a little with an old friend from high school who is also going to UCSF for a brain tumor that she was diagnosed with about 10 months ago and she is in a clinical trial using Avastin and a couple other drugs. She said that the Avastin is the easiest on her and that if that was all that she had to do, it would be no problem. Unfortunately, it sounds like the other drugs have been less than kind to her body. She is a wonderful person and has a loving husband and son. Please keep her and her family in your thoughts as well. I'll let you all know how it goes on Monday.
On a lighter note, I had the world's most relaxing pedicure today and my toes look fantastic :) I'm starting to understand the healing benefits of being pampered!
XOXO,
Laurie
Monday, August 2, 2010
Wow! It's been a while! Some good news :)
Hi Everyone,
Apparently I'm not a very good blogger considering it's been over a year and a half since my last posting. Well, I've enlisted some support this time. My wonderful sister, Dena, has offered to help me update my blog with the latest in my health news and other potentially interesting things going on :)
I'll take on this first one though...
For those of you who may not have received my recent "bad news" email, I'll give a quick recap. About 3 weeks ago, I noticed that I had some paralysis in my left ankle/foot. After seeing my neurologist and having an MRI, my oncologist broke the bad news that my tumor is growing again and that the chemo I'd been doing for the last 2 years wasn't working anymore. Needless to say, my family and I were pretty devastated. I was in a fog of tears and disbelief for a few days, but have since regained a sense of peace and have been absolutely overwhelmed by the outpouring of love and support from my friends and family. It seems kinda strange to say, but the last few days, seeing and talking to people who I haven't talked to in a long time, have been some of the happiest days I've had in a long time. I've definitely isolated myself in the last couple years, and it's taken this bad news for me to see what I've been missing :)
Onto the better news! My doctor at Kaiser was a total rockstar and was able to get approval from Kaiser for me to see a brain cancer specialist at UCSF and get all my records sent to them in just a couple days. Then UCSF kicked ass and got me an appointment for this afternoon. My parents and I went into the appointment with tissues, expecting to hear that I was nearing the end of my treatment options. But we were pleasantly surprised when Dr. Prados was very optomistic and said I have several treatment options and that there has been lots of progress made in the treatment of brain tumors in the 7 years since I last saw him. He suggested that I start by trying a chemotherapy called Avastin, in which I'll have an IV drip injection every 2 weeks. He said that it is very well tolerated by most patients, I won't lose my hair and I likely won't feel any nausea. He said that he can see no reason why I can't continue to work & live on my own. I will have an MRI in 6 weeks, after 3 rounds of the chemo, and see if it is has stopped the tumor's growth. He feels pretty confident that it will. If it isn't working, he mentioned that there are a few clinical trials as well that I may be a candidate for and that he has 3 others coming up soon.
He showed us several views of the MRI and pointed out that, although the tumor had grown, it was not necessarily by as much as we had originally been told. The large area that we had seen previously included a lot of adema (sp?) which, as I understand it, is like swelling around the tumor. It is still not good to have, but it can be treated pretty well by steroids and Dr. Prados said that the chemo I'm going to do is really good at reducing adema as well.
I've been told in the past that my tumor is inoperable, but he went into more specifics about why and what other options we have. Apparently it is right on or very close to my motor cortex. This means that any damage done to surrounding healthy tissue could lead to permanent paralysis. I know a lot of you have talked to me about gamma knife radiation and he talked about that too. It also is not a very good option due to my tumor's location. He said that, though gamma knife is state-of-the-art radiation and very effective in treating cancer, it also can cause swelling in surrounding tissue and would leave necrotic (dead) tissue around the tumor which has a 20% to 30% chance of causing paralysis. He said it's an option down the line, but certainly not a good one right now.
Well, it is way past my bedtime and I have to work in the morning (yay! & boo!). I want to thank everyone who has wished me well and have said prayers for me and cried with/for me. I want you all to know that I've had 8 years to prepare for really bad news and, to the credit of my awesome doctors and medical progress and all of your love and support, I've been spoiled with more years than I ever expected, when I first got my diagnosis, to enjoy with you all. It appears that they've hopefully pulled a rabbit out of the hat again.
I or Dena will post again once I start chemo and let you know how it's going.
Big hugs & kisses,
Laurie
Apparently I'm not a very good blogger considering it's been over a year and a half since my last posting. Well, I've enlisted some support this time. My wonderful sister, Dena, has offered to help me update my blog with the latest in my health news and other potentially interesting things going on :)
I'll take on this first one though...
For those of you who may not have received my recent "bad news" email, I'll give a quick recap. About 3 weeks ago, I noticed that I had some paralysis in my left ankle/foot. After seeing my neurologist and having an MRI, my oncologist broke the bad news that my tumor is growing again and that the chemo I'd been doing for the last 2 years wasn't working anymore. Needless to say, my family and I were pretty devastated. I was in a fog of tears and disbelief for a few days, but have since regained a sense of peace and have been absolutely overwhelmed by the outpouring of love and support from my friends and family. It seems kinda strange to say, but the last few days, seeing and talking to people who I haven't talked to in a long time, have been some of the happiest days I've had in a long time. I've definitely isolated myself in the last couple years, and it's taken this bad news for me to see what I've been missing :)
Onto the better news! My doctor at Kaiser was a total rockstar and was able to get approval from Kaiser for me to see a brain cancer specialist at UCSF and get all my records sent to them in just a couple days. Then UCSF kicked ass and got me an appointment for this afternoon. My parents and I went into the appointment with tissues, expecting to hear that I was nearing the end of my treatment options. But we were pleasantly surprised when Dr. Prados was very optomistic and said I have several treatment options and that there has been lots of progress made in the treatment of brain tumors in the 7 years since I last saw him. He suggested that I start by trying a chemotherapy called Avastin, in which I'll have an IV drip injection every 2 weeks. He said that it is very well tolerated by most patients, I won't lose my hair and I likely won't feel any nausea. He said that he can see no reason why I can't continue to work & live on my own. I will have an MRI in 6 weeks, after 3 rounds of the chemo, and see if it is has stopped the tumor's growth. He feels pretty confident that it will. If it isn't working, he mentioned that there are a few clinical trials as well that I may be a candidate for and that he has 3 others coming up soon.
He showed us several views of the MRI and pointed out that, although the tumor had grown, it was not necessarily by as much as we had originally been told. The large area that we had seen previously included a lot of adema (sp?) which, as I understand it, is like swelling around the tumor. It is still not good to have, but it can be treated pretty well by steroids and Dr. Prados said that the chemo I'm going to do is really good at reducing adema as well.
I've been told in the past that my tumor is inoperable, but he went into more specifics about why and what other options we have. Apparently it is right on or very close to my motor cortex. This means that any damage done to surrounding healthy tissue could lead to permanent paralysis. I know a lot of you have talked to me about gamma knife radiation and he talked about that too. It also is not a very good option due to my tumor's location. He said that, though gamma knife is state-of-the-art radiation and very effective in treating cancer, it also can cause swelling in surrounding tissue and would leave necrotic (dead) tissue around the tumor which has a 20% to 30% chance of causing paralysis. He said it's an option down the line, but certainly not a good one right now.
Well, it is way past my bedtime and I have to work in the morning (yay! & boo!). I want to thank everyone who has wished me well and have said prayers for me and cried with/for me. I want you all to know that I've had 8 years to prepare for really bad news and, to the credit of my awesome doctors and medical progress and all of your love and support, I've been spoiled with more years than I ever expected, when I first got my diagnosis, to enjoy with you all. It appears that they've hopefully pulled a rabbit out of the hat again.
I or Dena will post again once I start chemo and let you know how it's going.
Big hugs & kisses,
Laurie
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