At my appointment on August 8th at UCSF, my doctor confirmed what I had been told by Kaiser, that my tumor has not grown since my last MRI or in the 6 months since I started on this new drug! My doctor even thinks that there's a possibility that it has shrunk a little. It is a little hard to tell when comparing the 2 MRI's, but side by side, some of the blobs look slightly smaller :) And regarding the possible new growth that Kaiser had mentioned, my doctor at UCSF said he couldn't see what they were talking about and dismissed it as either nonexistent or nothing to worry about. He was still very excited that I'm having so few side effects!
Tomorrow my mom and I are driving up to Oregon to be in another walk with the National Brain Tumor Society in Portland on Saturday, August 20th. My Uncle Jim has organized a team called Walking with Laurie and it is sponsored by his nonprofit horse rescue, HyTyme Equine Rescue. If you are interested in joining us at the walk or making a donation, you can find our team page at the following link:
http://www.braintumorcommunity.org/site/TR?pg=team&fr_id=1665&team_id=47643
Asimportant as this walk is to me and the work of the NBTS, I feel just as passionate about the selfless work that my Uncle Jim, his family and all of his volunteers do for the sake of helping horses who can't help themselves. This ambitious undertaking and the staggering costs of feeding and rehabilitating the rescued horses has seen Hytyme face extremely difficult financial times recently. My uncle is one of the most compassionate people I know and it would mean the world to him to be able to continue the important work HyTyme is doing to help horses in need. If you are interested in finding out more about helping rescued horses or to make a donation, please click on the following link:
http://www.hytymeequinerescue.org/HyTymeEquineRescue/About.html
I'mreally looking forward to this trip up north :) Mom and I will be visiting lots of our friends and family up in Oregon, staying near Bend, on Mt. Hood and in Portland, and I'm going to get to see a couple good friends of mine from high school! My dad and Zach are flying up on Friday and will join us in the walk on Saturday. I know that this walk will be just as amazing as the San Francisco one and I can't wait to see everybody!
I have to finish packing because we're leaving at the crack of dawn, so I must put myself to bed now, but I hope that this post finds you all happy and healthy and enjoying this lovely summer :)
I will let you all know how the walk went when we get back. Hopefully we'll be blessed by the sun gods and be spared the Portland drizzle that reminds me so much of my childhood ;-)
XOXO,
Laurie
Sunday, August 14, 2011
Sunday, August 7, 2011
Man, how long has it been?
No apologies, I just really suck at blogging.
In April, I went to Cabo with my parents for nearly 2 weeks :) Dena stayed with us for almost a week, then a couple days after she left, Erin came for the last week and she and I flew home together. We have a timeshare there with a great pool and a beautiful beach. This was the first time I had tried swimming since the paralysis in my left leg. It was SO weird! My mom and Dena and I went into a shallow hot tub one of the first nights and I realized that dead limbs float :) I carefully made my way down the stairs and I actually had to really think about pushing my leg toward the floor of the tub. We all got a good laugh out of that.
I quickly realized that swimming, or I should say getting into the pool, is a very stressful undertaking. Walking without my brace is really difficult because my foot wants to twist inward and I always run the risk of twisting my ankle. Therefore, I have to walk very slowly when I don't have my brace on. Unfortunately, this can be very painful when walking on a scorching hot pool deck or sand :( The first time I tried to get from our chairs to the pool, I started freaking out from the heat and my parents had to throw a towel on the ground for me to walk on. As much as I LOVE being seen in a bathing suit, this only drew more attention to me and I basically wanted to run screaming, which I would have done, were it not for my bum leg. So, I just got to be the poolside entertainment.
The next day we tried hanging out on the beach. This went pretty well until I had to go to the bathroom. I didn't want to take the time to put my brace and socks and shoes on, so I tried making my way to the steps barefoot. Bad idea!!! The sand was even hotter than the pool deck once I got out of the shade and Dena and my mom had to rush over to me with another towel to walk on. Again, all eyes on me. The stairs were still a long way off, so I opted to head to a low wall that was closer. This, of course, was right in front of the beachside restaurant and as I got on my hands and knees and tried to get up, a couple men from a nearby table came rushing over to help me, as well as Mom and Dena. And mind you, again, I am in a bathing suit. I can think of few times that I have ever been that humiliated and I hobbled up to the room in tears. The lesson here... things in my life just take a lot longer these days. I have to take the time to put on my brace and invent a water-compatible brace that doesn't require shoes and socks.
The same day that Erin and I flew into San Francisco, my cousin, Zach, flew in from Florida to walk with us in the National Brain Tumor Society 5K and to stay with us for a whole month! I hadn't seen him in several years and I was so excited to have so much time to reconnect with him. Also, the following day, our good friend from high school, Emma, and her adorable daughter, Mia, came from Australia to walk with us!!! I had not seen Emma in 9 years, since I was first diagnosed, and it was SO amazing to get to spend several days with her and Mia. My whole family was ready to adopt both of them! Amazingly, those weren't the only out-of-towners to join us. My good friend, Miriam, came from Portland and Erin's uncle and girlfriend came from Idaho! Not to mention folks from all over the bay area and Sacramento and Tahoe :) An old friend and roommate of mine from my Cal Poly days, who I hadn't seen in probably 12 years, volunteered at the walk and met up with all of us for lunch after. In all honesty, I know it was the best day of my life so far. That night, exhausted from the day and all of the emotions it brought up in me, and after reliving the highlights with my parents, Zach and Emma, everyone went to bed and I was left sitting on the couch in the living room, all by myself. I had the best cry I can remember. I have never felt so extremely loved by so many amazing people and it made every minute of my struggle over the last several years absolutlely worth it. Whether you were able to make it to the walk or not, I am so extremely lucky to have the friends and family that I do in my life. I love you all so much!
Emma and Mia stayed with us for 3 more wonderful days, and I had an MRI the day after they went home. The results of the MRI were as good as we could have hoped for by showing no tumor growth :) It appears that the trial drug I'm on is still working and my doctor at UCSF has told me that I am the only person on the study who has not had to have their dose lowered due to poor blood cell counts. Apparently I am doing better than anyone else in the study. As happy as I am that I am doing well, I feel terrible for those who are not faring as well. I've been told that some of the people started in worse shape than I was, and others can't tolerate the effects of the chemo on their immune system. For some reason, I've been blessed with a pretty strong immune system and a stomach of steel so I have experienced no nausea on this medication.
I had my 6 month MRI on July 25th and have an appointment at UCSF tomorrow to discuss the results, though, from my doctor at Kaiser, I have been told that, again, the tumor shows no signs of growth! I guess they did see something that looks like a tiny new growth, but my doctor didn't seem too concerned. I suppose they would just treat it with the same medication I'm already on. I'll let you know after my appointment tomorrow.
Let's see, what else??? We got a new kitten :) My sister's family was adopted by a stray cat who promptly got herself knocked up and had 8 kittens. We took one and she is the cutest little shithead ever. Her official name is Eliza Doolittle because she's very petite and reminds me of Audrey Hepburn in My Fair Lady, but we all just call her Little Kitty. She has two personalities... asleep and hell-raiser. The other cats despise her and Horch doesn't really know what to think about her. She's just so cute that it makes it easy to look past my bloody ankles and arms :)
Having Zach as a playmate for a month, I felt a real loss and mourning after he left. We really bonded and I almost think we were twins separated at birth. Luckily, he had a friend who was moving to the bay area 3 weeks later and hitched a ride with her and is now living with us again, trying to find work out here to make a permanent move! Unfortunately, finding a job is a nearly impossible task these days, and he's hit some big road blocks, but we're trying to stay optomistic that something will work out soon.
My dad finished the basement several weeks ago and it is SO awesome! I'm mostly moved in, I just need to start hanging pictures to make it really homey :) It stays about 5-10 degrees cooler down here which makes it perfect in the summer, and the propane stove that my dad had installed heats it really quickly in the winter. It's as awesome a setup as a 36 year old can have living with her parents in the middle of nowhere, lol! My dad made all of the cabinets and shelves in the bathroom, kitchenette and closet from scratch and laid the hardwood floors. He really is a craftsman! Thank you Dad, so much, for the work you put into my new digs... I absolutely love it! Check out the pix below. Pretty nice huh?!?!?
In April, I went to Cabo with my parents for nearly 2 weeks :) Dena stayed with us for almost a week, then a couple days after she left, Erin came for the last week and she and I flew home together. We have a timeshare there with a great pool and a beautiful beach. This was the first time I had tried swimming since the paralysis in my left leg. It was SO weird! My mom and Dena and I went into a shallow hot tub one of the first nights and I realized that dead limbs float :) I carefully made my way down the stairs and I actually had to really think about pushing my leg toward the floor of the tub. We all got a good laugh out of that.
I quickly realized that swimming, or I should say getting into the pool, is a very stressful undertaking. Walking without my brace is really difficult because my foot wants to twist inward and I always run the risk of twisting my ankle. Therefore, I have to walk very slowly when I don't have my brace on. Unfortunately, this can be very painful when walking on a scorching hot pool deck or sand :( The first time I tried to get from our chairs to the pool, I started freaking out from the heat and my parents had to throw a towel on the ground for me to walk on. As much as I LOVE being seen in a bathing suit, this only drew more attention to me and I basically wanted to run screaming, which I would have done, were it not for my bum leg. So, I just got to be the poolside entertainment.
The next day we tried hanging out on the beach. This went pretty well until I had to go to the bathroom. I didn't want to take the time to put my brace and socks and shoes on, so I tried making my way to the steps barefoot. Bad idea!!! The sand was even hotter than the pool deck once I got out of the shade and Dena and my mom had to rush over to me with another towel to walk on. Again, all eyes on me. The stairs were still a long way off, so I opted to head to a low wall that was closer. This, of course, was right in front of the beachside restaurant and as I got on my hands and knees and tried to get up, a couple men from a nearby table came rushing over to help me, as well as Mom and Dena. And mind you, again, I am in a bathing suit. I can think of few times that I have ever been that humiliated and I hobbled up to the room in tears. The lesson here... things in my life just take a lot longer these days. I have to take the time to put on my brace and invent a water-compatible brace that doesn't require shoes and socks.
The same day that Erin and I flew into San Francisco, my cousin, Zach, flew in from Florida to walk with us in the National Brain Tumor Society 5K and to stay with us for a whole month! I hadn't seen him in several years and I was so excited to have so much time to reconnect with him. Also, the following day, our good friend from high school, Emma, and her adorable daughter, Mia, came from Australia to walk with us!!! I had not seen Emma in 9 years, since I was first diagnosed, and it was SO amazing to get to spend several days with her and Mia. My whole family was ready to adopt both of them! Amazingly, those weren't the only out-of-towners to join us. My good friend, Miriam, came from Portland and Erin's uncle and girlfriend came from Idaho! Not to mention folks from all over the bay area and Sacramento and Tahoe :) An old friend and roommate of mine from my Cal Poly days, who I hadn't seen in probably 12 years, volunteered at the walk and met up with all of us for lunch after. In all honesty, I know it was the best day of my life so far. That night, exhausted from the day and all of the emotions it brought up in me, and after reliving the highlights with my parents, Zach and Emma, everyone went to bed and I was left sitting on the couch in the living room, all by myself. I had the best cry I can remember. I have never felt so extremely loved by so many amazing people and it made every minute of my struggle over the last several years absolutlely worth it. Whether you were able to make it to the walk or not, I am so extremely lucky to have the friends and family that I do in my life. I love you all so much!
Emma and Mia stayed with us for 3 more wonderful days, and I had an MRI the day after they went home. The results of the MRI were as good as we could have hoped for by showing no tumor growth :) It appears that the trial drug I'm on is still working and my doctor at UCSF has told me that I am the only person on the study who has not had to have their dose lowered due to poor blood cell counts. Apparently I am doing better than anyone else in the study. As happy as I am that I am doing well, I feel terrible for those who are not faring as well. I've been told that some of the people started in worse shape than I was, and others can't tolerate the effects of the chemo on their immune system. For some reason, I've been blessed with a pretty strong immune system and a stomach of steel so I have experienced no nausea on this medication.
I had my 6 month MRI on July 25th and have an appointment at UCSF tomorrow to discuss the results, though, from my doctor at Kaiser, I have been told that, again, the tumor shows no signs of growth! I guess they did see something that looks like a tiny new growth, but my doctor didn't seem too concerned. I suppose they would just treat it with the same medication I'm already on. I'll let you know after my appointment tomorrow.
Let's see, what else??? We got a new kitten :) My sister's family was adopted by a stray cat who promptly got herself knocked up and had 8 kittens. We took one and she is the cutest little shithead ever. Her official name is Eliza Doolittle because she's very petite and reminds me of Audrey Hepburn in My Fair Lady, but we all just call her Little Kitty. She has two personalities... asleep and hell-raiser. The other cats despise her and Horch doesn't really know what to think about her. She's just so cute that it makes it easy to look past my bloody ankles and arms :)
Having Zach as a playmate for a month, I felt a real loss and mourning after he left. We really bonded and I almost think we were twins separated at birth. Luckily, he had a friend who was moving to the bay area 3 weeks later and hitched a ride with her and is now living with us again, trying to find work out here to make a permanent move! Unfortunately, finding a job is a nearly impossible task these days, and he's hit some big road blocks, but we're trying to stay optomistic that something will work out soon.
My dad finished the basement several weeks ago and it is SO awesome! I'm mostly moved in, I just need to start hanging pictures to make it really homey :) It stays about 5-10 degrees cooler down here which makes it perfect in the summer, and the propane stove that my dad had installed heats it really quickly in the winter. It's as awesome a setup as a 36 year old can have living with her parents in the middle of nowhere, lol! My dad made all of the cabinets and shelves in the bathroom, kitchenette and closet from scratch and laid the hardwood floors. He really is a craftsman! Thank you Dad, so much, for the work you put into my new digs... I absolutely love it! Check out the pix below. Pretty nice huh?!?!?
Tuesday, March 22, 2011
The Best Birthday Present Ever!
I had a much anticipated and nail-biting doctor's appointment today at UCSF with the best possible outcome I could have hoped for! I had an MRI on March 15th to compare with one that I had taken 2 months earlier, to see if the trial drug that I have been on is working, and all signs say that it is kicking butt! It is such a nice feeling to walk into a neuro-oncologist's office and see him smiling :) During our visit, he was thrilled to hear that I have had virtually no side effects from the medication. He always does a thorough neurological exam, asking me to follow his finger with my eyes or does it feel the same when he touches one side of my face vs the other side, that sort of test. I passed with flying colors, except my bad left leg, of course, and everything seems to be stable.
I had ANOTHER issue with getting the MRI images from Kaiser, but eventually was able to pick up a CD yesterday to take to my appointment. Since I couldn't get it to him earlier, they had to reformat the pictures to be able to compare them, apples to apples, with my previous MRI, which they weren't able to finish until after we left the hospital. In the appointment, he said he had looked at the new MRI and didn't see anything that concerned him, but that he could not confirm that for a couple hours, until they could officially compare it to the previous MRI. Finally, just after 5pm, I got a call from him saying that my tumor looks stable and that he was very happy with the results :) It is SO much nicer getting to write this kind of post rather than the ones I dread!
On another nice note, my mom and I just got back from a wonderful trip up to Portland and Mt. Hood to surprise our good friend for her 60th birthday. We saw a bunch of friends who I grew up with, as well as my uncle and cousin and one of my best friends from high school. It was totally relaxing while we spent 3 nights at our friends' cabin on Mt. Hood with a fire blazing, snow falling outside and a river running past, then a total party over the weekend when we stayed at a hotel in Portland for the surprise party. We were exhausted by the time we got home, but it was well worth it!
To further add to our fun/exhaustion, we flew in to Sacramento yesterday then drove to San Francisco where my sister, her husband and my niece met us to celebrate my birthday and go to my appointment this morning. We had a great time and had a nice lunch at Fisherman's Wharf today to celebrate the good news after my appointment :) Dena's family got me an awesome new camera for my b-day, so I'm finally going to start taking pictures of the basement remodel and post them so you can see the fantastic new room Dad's finishing for me.
It's been a busy, super cool week, but I tell ya, my bed is feeling pretty friggin good right about now :) I hope this finds you all doing well, or at least reminds you that life is one big, long roller coaster. One moment you're scared as hell, going up hill with your stomach in your throat, then the next, you're screaming for joy as you zoom around the twists and turns. I just celebrated my 36th birthday and there was a time when I was worried that I wouldn't live to see my 26th! As hard as we try, we just can't plan exactly what's around the corner. I've been forced to learn to do the best with what I've been dealt and to keep flexible and adaptable when life throws me a challenge. I'm starting to realize that optimism and a good attitude really do pay off :)
With that little nugget, I bid you all farewell, I'm pooped! Until next time...
I had ANOTHER issue with getting the MRI images from Kaiser, but eventually was able to pick up a CD yesterday to take to my appointment. Since I couldn't get it to him earlier, they had to reformat the pictures to be able to compare them, apples to apples, with my previous MRI, which they weren't able to finish until after we left the hospital. In the appointment, he said he had looked at the new MRI and didn't see anything that concerned him, but that he could not confirm that for a couple hours, until they could officially compare it to the previous MRI. Finally, just after 5pm, I got a call from him saying that my tumor looks stable and that he was very happy with the results :) It is SO much nicer getting to write this kind of post rather than the ones I dread!
On another nice note, my mom and I just got back from a wonderful trip up to Portland and Mt. Hood to surprise our good friend for her 60th birthday. We saw a bunch of friends who I grew up with, as well as my uncle and cousin and one of my best friends from high school. It was totally relaxing while we spent 3 nights at our friends' cabin on Mt. Hood with a fire blazing, snow falling outside and a river running past, then a total party over the weekend when we stayed at a hotel in Portland for the surprise party. We were exhausted by the time we got home, but it was well worth it!
To further add to our fun/exhaustion, we flew in to Sacramento yesterday then drove to San Francisco where my sister, her husband and my niece met us to celebrate my birthday and go to my appointment this morning. We had a great time and had a nice lunch at Fisherman's Wharf today to celebrate the good news after my appointment :) Dena's family got me an awesome new camera for my b-day, so I'm finally going to start taking pictures of the basement remodel and post them so you can see the fantastic new room Dad's finishing for me.
It's been a busy, super cool week, but I tell ya, my bed is feeling pretty friggin good right about now :) I hope this finds you all doing well, or at least reminds you that life is one big, long roller coaster. One moment you're scared as hell, going up hill with your stomach in your throat, then the next, you're screaming for joy as you zoom around the twists and turns. I just celebrated my 36th birthday and there was a time when I was worried that I wouldn't live to see my 26th! As hard as we try, we just can't plan exactly what's around the corner. I've been forced to learn to do the best with what I've been dealt and to keep flexible and adaptable when life throws me a challenge. I'm starting to realize that optimism and a good attitude really do pay off :)
With that little nugget, I bid you all farewell, I'm pooped! Until next time...
Thursday, March 10, 2011
Good Grains!
Ok, to start, Erin & Tommy FINALLY got back from New Zealand, totally safe and they had an awesome adventure. Apparently the earthquake didn't derail their plans at all and they had a magnificent time. I'm gonna see my BFF tomorrow, for the first time in a month, but it feels like a year. I'm gonna have to have a chat with her about taking such long vacations from me ;)
I haven't written any recent posts simply because I haven't had much to write about. I've been taking my trial drug pills and honestly haven't had any side effects or other drama in my life, so fortunately, life's been pretty chill. I've re-established a relationship with one of my cousins, which just makes me smile from ear to ear and I've been baking like a fiend, but not too much else going on up here in the sticks.
On the baking note, I must admit that I've perfected an AWESOME multi-grain bread that will make your head spin. I just finished making 2 loaves and a dozen rolls and they turned out spectacular. I don't like to toot my own horn, but I LOVE making bread and this one kicks ass. It's got oatmeal, cornmeal, quinoa, brown rice, a nine-grain blend, flax seed, honey... it's like a meal all by itself. If I ever make a name for myself in the food industry, it will be with this bread :) I feel so in touch with my pioneering fore-mothers!
The basement is well on its way to being finished, yay! The guys are coming tomorrow to finish the bathroom and mini kitchen which should just take a couple days. They will also finish installing a propane stove to heat the joint. Dad's planning on getting some help from his BFF to install the flooring near the end of March, so it should be move-in ready by early April :) We just bought an awesome rustic armoire and nightstands for a steal which should add to the cabiney feel, plus give me some staorage space. I'll post a bunch of pix as we near the finish.
In terms of the whole "cancer" issue, I don't have much interesting to post at the moment. On March 15th, I have an MRI scheduled, my first one since starting on the trial I'm doing. It will tell if the trial drug I'm on is working (no tumor growth or shrinking) or if it isn't (tumor growth). I have an appointment with my doctor at UCSF on March 22nd where I will learn the outcome of the MRI. My 36th birthday is on March 21st. I'm planning taking a long pause to celebrate what I never thought I'd experience when I was first diagnosed at the age of 26. I never even thought to look past a few months at the time, and now I'm here, happy as a clam, nearly a decade later. I'm trying not to think too much about it and just enjoy the simple things in life like my amazing friends, family, baking, crocheting, the approaching spring, my upcoming trip to Cabo (April 22nd-May5th), the happy, frolicking cows I see as I travel down Fiddletown Road, etc. If the drug is working, I will stay on it for at least a year, assuming it continues working. If it is not, I will move onto the next trial, and so on. I've been feeling REALLY good lately, physically and emotionally, so I have to take that as good news :) My legs are getting stronger which makes walking and stairs easier to navigate and I'm just getting used to my disability, to the point where it pretty much feels normal these days.
I hope this posting finds you all looking forward to the warm breezes of Spring and the thawing out of Winter bones :)
XOXO,
LG
I haven't written any recent posts simply because I haven't had much to write about. I've been taking my trial drug pills and honestly haven't had any side effects or other drama in my life, so fortunately, life's been pretty chill. I've re-established a relationship with one of my cousins, which just makes me smile from ear to ear and I've been baking like a fiend, but not too much else going on up here in the sticks.
On the baking note, I must admit that I've perfected an AWESOME multi-grain bread that will make your head spin. I just finished making 2 loaves and a dozen rolls and they turned out spectacular. I don't like to toot my own horn, but I LOVE making bread and this one kicks ass. It's got oatmeal, cornmeal, quinoa, brown rice, a nine-grain blend, flax seed, honey... it's like a meal all by itself. If I ever make a name for myself in the food industry, it will be with this bread :) I feel so in touch with my pioneering fore-mothers!
The basement is well on its way to being finished, yay! The guys are coming tomorrow to finish the bathroom and mini kitchen which should just take a couple days. They will also finish installing a propane stove to heat the joint. Dad's planning on getting some help from his BFF to install the flooring near the end of March, so it should be move-in ready by early April :) We just bought an awesome rustic armoire and nightstands for a steal which should add to the cabiney feel, plus give me some staorage space. I'll post a bunch of pix as we near the finish.
In terms of the whole "cancer" issue, I don't have much interesting to post at the moment. On March 15th, I have an MRI scheduled, my first one since starting on the trial I'm doing. It will tell if the trial drug I'm on is working (no tumor growth or shrinking) or if it isn't (tumor growth). I have an appointment with my doctor at UCSF on March 22nd where I will learn the outcome of the MRI. My 36th birthday is on March 21st. I'm planning taking a long pause to celebrate what I never thought I'd experience when I was first diagnosed at the age of 26. I never even thought to look past a few months at the time, and now I'm here, happy as a clam, nearly a decade later. I'm trying not to think too much about it and just enjoy the simple things in life like my amazing friends, family, baking, crocheting, the approaching spring, my upcoming trip to Cabo (April 22nd-May5th), the happy, frolicking cows I see as I travel down Fiddletown Road, etc. If the drug is working, I will stay on it for at least a year, assuming it continues working. If it is not, I will move onto the next trial, and so on. I've been feeling REALLY good lately, physically and emotionally, so I have to take that as good news :) My legs are getting stronger which makes walking and stairs easier to navigate and I'm just getting used to my disability, to the point where it pretty much feels normal these days.
I hope this posting finds you all looking forward to the warm breezes of Spring and the thawing out of Winter bones :)
XOXO,
LG
Monday, February 21, 2011
Slow, Relaxing, Cold Week
Wow, I just saw a shooting star! That was cool :)
Ok, bat problem was never really resolved. He never showed up again and Dad, unfortunately for him, never got to any shooting practice. He just disappeared or escaped. Lucky little guy!
We got a bunch of snow last week and I had to leave my car at the bottom of our extremely steep driveway after a trip into Sacramento & my dad had to rescue me on his Polaris. Luckily my car is all wheel drive cuz I passed several 2-wheel cars that were stuck when on Fiddletown Road.
Yesterday Mom and I had a cooking marathon :) She made a delicious burgundy wine stew and I made butternut squash soup and some super rustic, hardy multigrain rolls. I'm making a double batch of the rolls tomorrow... they went over really well :) I'm not really one to toot my own horn, but I think we could start a restaurant on the reputation of these rolls alone.
Now, on a serious note, I'm scared for my best friend in the whole wide world! Erin and her husband, Tommy, are on a month long trip in New Zealand ( I know, tough life, right?!?). Not sure if you heard, but today they had a big earthquake in the capital of New Zealand, which, from my best estimate, is about 200 miles from where I think they were. I haven't heard from her yet, and I'm sure I'm just being paranoid, but still... I'm paranoid. You'd think that I would be used to earthquake stories, living in California, but they're just so far away! They're fine Laurie, they're totally safe and just hiking around in some beautiful scenery... it will all be a funny memory very soon. One thing to make me (us) feel better, Tommy is a paramedic & totally trained to take charge in any situation :) Hugs & kisses E&T!
Hope you all had a nice President's Day :)
xoxo, lg
Ok, bat problem was never really resolved. He never showed up again and Dad, unfortunately for him, never got to any shooting practice. He just disappeared or escaped. Lucky little guy!
We got a bunch of snow last week and I had to leave my car at the bottom of our extremely steep driveway after a trip into Sacramento & my dad had to rescue me on his Polaris. Luckily my car is all wheel drive cuz I passed several 2-wheel cars that were stuck when on Fiddletown Road.
Yesterday Mom and I had a cooking marathon :) She made a delicious burgundy wine stew and I made butternut squash soup and some super rustic, hardy multigrain rolls. I'm making a double batch of the rolls tomorrow... they went over really well :) I'm not really one to toot my own horn, but I think we could start a restaurant on the reputation of these rolls alone.
Now, on a serious note, I'm scared for my best friend in the whole wide world! Erin and her husband, Tommy, are on a month long trip in New Zealand ( I know, tough life, right?!?). Not sure if you heard, but today they had a big earthquake in the capital of New Zealand, which, from my best estimate, is about 200 miles from where I think they were. I haven't heard from her yet, and I'm sure I'm just being paranoid, but still... I'm paranoid. You'd think that I would be used to earthquake stories, living in California, but they're just so far away! They're fine Laurie, they're totally safe and just hiking around in some beautiful scenery... it will all be a funny memory very soon. One thing to make me (us) feel better, Tommy is a paramedic & totally trained to take charge in any situation :) Hugs & kisses E&T!
Hope you all had a nice President's Day :)
xoxo, lg
Sunday, February 13, 2011
I guess this is what you get for living in paradise!
Ok, so it's about 11:30 and I just came downstairs to sleep in our office... the darn bat from the other night started flying around again a few minutes after I turned out the light in my bedroom! This means that it was likely doing the same thing last night and I slept through it. I guess Dad will be getting some target practice in tomorrow ;) Anyone know where I can get a butterfly net???
First Round Was a Breeze :)
Well, I just have a couple nights left on my first round of the new trial drug I'm on and I would never know it if you were slipping it into my food. In fact, I've been feeling great for the last few weeks with literally no side effects :)
A few weeks ago a friend of mine found out about a walk for brain tumors on May 7th in Golden Gate park and we've formed a team that is taking off like wildfire! Team Laurie's Ride is already the #3 fundraising team out of over 100 teams! It's been amazing to see how supportive everyone has been!
You can visit my home page at the link below & make a tax deductible donation if you'd like:
http://www.braintumorcommunity.org/site/TR/Events/BTW-SF?px=2874742&pg=personal&fr_id=1663
OR, if you'd like to walk with us, you can visit our team's page at the following link:
http://www.braintumorcommunity.org/site/TR/Events/BTW-SF?pg=team&fr_id=1663&team_id=45281
We have 18 people officially signed up to walk with us and are hoping to get as many as possible. There is only a $25 sign up fee, and then whatever else you can raise, but you are not required to raise any other money. We're working on getting T-shirts made too :)
Mom and I have started training for the walk. It is only a 5K (just over 3 miles), which would have been no sweat for me a few months ago, but since I've got my bumb left leg now, it's a bit more of a challenge. I'm totally committed to walking across the finish line though! Mom and I have done 2, 1 mile walks so far, but keep in mind that those miles were up and down the fairly substantial hills around our house. I'm pretty proud of us. I plan on having the butt I had when I was 17 by the time the walk comes :) If you have seen our driveway that we have to walk up and down, you'd realize that it might just happen!
Speaking of my bumb left leg, I think it's getting a little better! Either that or the stretches and exercises I've been doing are finally paying off because I'm not needing my cane nearly as much as I used to and I feel a lot more stable. I'm not falling anymore and stairs and curbs don't send me into a panic anymore :) I think my blood clot is just about gone and I've been wondering if it contributed to some of the trouble I've been having with moving my leg. It just really feels like I have more control over it, yay!
To end on a bit of a funny note, we woke up to a bat in our house a couple nights ago :) We occasionally have bats sneak in and my dad feels like a real outdoors man by hunting them with his bee bee gun. He's gotten a few so far. Well, the other night, my sister and her daughter were staying over and the three of us were sleeping upstairs in my bedroom. Shortly after turning off the lights, I heard a buzzing around my head. I turned on the light and wouldn't ya know it, there was a bat flying around like crazy! I tried to get it with my cane, without much luck, so we ducked out of the room and called Dad. He didn't have any more luck with his bee bee gun than my feeble cane-wielding attempts. Dena and Harley ended up sleeping on the couch and I crashed in a sleeping bag on the floor. We never did find the little bugger!
Not too much else going on lately. All the permits and inspections are done for my room they're finishing downstairs so they're really getting stuff done now. I'll try to post some pictures soon :)
Happy Valentine's Day y'all!!!!
Heart, Laurie
A few weeks ago a friend of mine found out about a walk for brain tumors on May 7th in Golden Gate park and we've formed a team that is taking off like wildfire! Team Laurie's Ride is already the #3 fundraising team out of over 100 teams! It's been amazing to see how supportive everyone has been!
You can visit my home page at the link below & make a tax deductible donation if you'd like:
http://www.braintumorcommunity.org/site/TR/Events/BTW-SF?px=2874742&pg=personal&fr_id=1663
OR, if you'd like to walk with us, you can visit our team's page at the following link:
http://www.braintumorcommunity.org/site/TR/Events/BTW-SF?pg=team&fr_id=1663&team_id=45281
We have 18 people officially signed up to walk with us and are hoping to get as many as possible. There is only a $25 sign up fee, and then whatever else you can raise, but you are not required to raise any other money. We're working on getting T-shirts made too :)
Mom and I have started training for the walk. It is only a 5K (just over 3 miles), which would have been no sweat for me a few months ago, but since I've got my bumb left leg now, it's a bit more of a challenge. I'm totally committed to walking across the finish line though! Mom and I have done 2, 1 mile walks so far, but keep in mind that those miles were up and down the fairly substantial hills around our house. I'm pretty proud of us. I plan on having the butt I had when I was 17 by the time the walk comes :) If you have seen our driveway that we have to walk up and down, you'd realize that it might just happen!
Speaking of my bumb left leg, I think it's getting a little better! Either that or the stretches and exercises I've been doing are finally paying off because I'm not needing my cane nearly as much as I used to and I feel a lot more stable. I'm not falling anymore and stairs and curbs don't send me into a panic anymore :) I think my blood clot is just about gone and I've been wondering if it contributed to some of the trouble I've been having with moving my leg. It just really feels like I have more control over it, yay!
To end on a bit of a funny note, we woke up to a bat in our house a couple nights ago :) We occasionally have bats sneak in and my dad feels like a real outdoors man by hunting them with his bee bee gun. He's gotten a few so far. Well, the other night, my sister and her daughter were staying over and the three of us were sleeping upstairs in my bedroom. Shortly after turning off the lights, I heard a buzzing around my head. I turned on the light and wouldn't ya know it, there was a bat flying around like crazy! I tried to get it with my cane, without much luck, so we ducked out of the room and called Dad. He didn't have any more luck with his bee bee gun than my feeble cane-wielding attempts. Dena and Harley ended up sleeping on the couch and I crashed in a sleeping bag on the floor. We never did find the little bugger!
Not too much else going on lately. All the permits and inspections are done for my room they're finishing downstairs so they're really getting stuff done now. I'll try to post some pictures soon :)
Happy Valentine's Day y'all!!!!
Heart, Laurie
Wednesday, January 26, 2011
So Far, So Good :)
Ok, so it has been just over 24 hours since I took my first dose of the trial drug and I've had virtually no problems. I slept like a log last night (and most of the morning) and have felt fine all day. I told my mom today that I can kinda tell that I've taken something, but it's very non-specific. Almost like I have a very, very minor hangover. I felt like this a lot of the time that I was on Temodar, so I'm guessing I will have a similar experience with it. Other than that, not much else is going on here :) I had a lazy, lazy day...
Tuesday, January 25, 2011
Hip! Hip! Hooray!!!
I FINALLY got the call I had been waiting for yesterday! UCSF received a new portion of my tumor from Kaiser that was big enough to test, and it passed the RB test so I was approved to do the first study that I was REALLY hoping to get into :) My mom and I went up to SF today and picked up the pills and I took my first dose about 2 hours ago.
So here's the specifics: I'll be taking pills, at home, of the trial drug once a day for 3 weeks, then I get 1 week off to recover, so it is a 28 day cycle. I'll have an MRI, EKG and meeting with a doc after every 2 cycles. If the tumor either shows no growth or shrinks, I will continue on the treatment for 12 cycles, which can be extended to 24 cycles if I choose and it is still working. If the tumor grows, then the medication obviously isn't working and I will move on to the other trial which I am already approved for.
Right now I can kinda feel my stomach gurgling a little. I have some anti-nausea medicine I can take if that becomes an issue, but the nurse told me to try starting without it. This is a very similar feeling to what I felt when I used to take my Temodar pills, so I'm hoping that my side effects are similar as well. I tolerated Temodar really well and took it for several years. All I really had was some nausea, which the anti-nausea pills totally contained, and fatigue, but that didn't even set in for several months. The literature on this new drug says that nausea and fatigue are also it's most likely side effects. I am supposed to keep a journal of when I take it, how much I take and any side effects. Cross your fingers that I'm not yacking in a couple hours :) I'll let you know tomorrow if anything significant happens tonight.
I'm really relieved to finally be doing SOMETHING! My last treatment of Avastin was toward the end of November and I have had no other cancer-fighting treatments since! Basically, my tumor has been allowed to grow, unchecked, for nearly 8 weeks and, luckily, it has behaved very well :) It seems to have grown very little and has not ticked off my motor strip any further so I have had no new symptoms and no further paralysis or weakness. I first talked to the doctor at UCSF about getting enrolled in this trial on December 14th, so it took 5 weeks to git'erdone, but now I'm finally on a medication! It has been really frustrating, but I've been trying my best to not stress about it. My obsession, crocheting, has been a sanity saver! When I've got both hands busy and I'm thinking about the pattern, it just takes all my cares away :) Though my mom gets kinda annoyed when I ignore her because I'm counting stitches and will lose my place if I reply. Between that, reading, doctors appointments and visiting friends, my days tend to keep me much more entertained than I expected when I first moved to Fiddletown :)
Ok, it's late and my sleeping pill is finally starting to kick in. Wish me luck that I make it through the rest of the night... I'm going to go get a trash can to keep beside my bed... just in case!
So here's the specifics: I'll be taking pills, at home, of the trial drug once a day for 3 weeks, then I get 1 week off to recover, so it is a 28 day cycle. I'll have an MRI, EKG and meeting with a doc after every 2 cycles. If the tumor either shows no growth or shrinks, I will continue on the treatment for 12 cycles, which can be extended to 24 cycles if I choose and it is still working. If the tumor grows, then the medication obviously isn't working and I will move on to the other trial which I am already approved for.
Right now I can kinda feel my stomach gurgling a little. I have some anti-nausea medicine I can take if that becomes an issue, but the nurse told me to try starting without it. This is a very similar feeling to what I felt when I used to take my Temodar pills, so I'm hoping that my side effects are similar as well. I tolerated Temodar really well and took it for several years. All I really had was some nausea, which the anti-nausea pills totally contained, and fatigue, but that didn't even set in for several months. The literature on this new drug says that nausea and fatigue are also it's most likely side effects. I am supposed to keep a journal of when I take it, how much I take and any side effects. Cross your fingers that I'm not yacking in a couple hours :) I'll let you know tomorrow if anything significant happens tonight.
I'm really relieved to finally be doing SOMETHING! My last treatment of Avastin was toward the end of November and I have had no other cancer-fighting treatments since! Basically, my tumor has been allowed to grow, unchecked, for nearly 8 weeks and, luckily, it has behaved very well :) It seems to have grown very little and has not ticked off my motor strip any further so I have had no new symptoms and no further paralysis or weakness. I first talked to the doctor at UCSF about getting enrolled in this trial on December 14th, so it took 5 weeks to git'erdone, but now I'm finally on a medication! It has been really frustrating, but I've been trying my best to not stress about it. My obsession, crocheting, has been a sanity saver! When I've got both hands busy and I'm thinking about the pattern, it just takes all my cares away :) Though my mom gets kinda annoyed when I ignore her because I'm counting stitches and will lose my place if I reply. Between that, reading, doctors appointments and visiting friends, my days tend to keep me much more entertained than I expected when I first moved to Fiddletown :)
Ok, it's late and my sleeping pill is finally starting to kick in. Wish me luck that I make it through the rest of the night... I'm going to go get a trash can to keep beside my bed... just in case!
Tuesday, January 18, 2011
STILL Waiting!!!
Uuuurrrrggggghhh! I'm so frustrated! Last Friday I had an MRI at UCSF and an appointment with an oncologist there to discuss me FINALLY starting a clinical trial. After a month of requesting it, they finally received a pathology slide from Kaiser, but there was too little tumor material on it for them to test it! Though UCSF has everything they need for me to start this trial, they NEED to test my tumor to see if it has some RB factor (or something like that). UCSF called Kaiser again to see if they had a larger sample and they said that yes, they do have more... WHY DIDN'T THEY SEND THAT IN THE FIRST PLACE??? They said they could get it to UCSF by this coming Friday... another week??? Why??? UPS can overnight it!!! Yesterday, I called the lady at Kaiser who shipped the first sample & left a message on her voicemail that this was extremely urgent and that my life could depend on her getting it to them as soon as possible and that it was unfortunate that I needed to request this over the Christmas, New Years and MLK holidays, but Friday is not good enough. She shipped it this morning and it should get to UCSF Wednesday morning :)
Harley's Dancing Panda & Super Mason Monkey.
The lesson learned here: You MUST be your own advocate when it comes to your health! Trust your instincts, listen to your body & if it feels like someone isn't listening to you, keep calling around until someone does. I was just a number to this lady at Kaiser until I let her know that she could be a big part in extending my life.
So now, hopefully my tumor will have the RB factor that I need to be in the study and I could start, possibly as soon as the end of this week :) By the way, my MRI from Friday showed that my tumor may have grown slightly since my previous MRI on December 1. The oncologist compared it to the previous one and luckily there wasn't a real obvious growth. Since I still haven't had any new physical changes, she said she thinks we still have enough time to try to get me into the first trial.
Again, on a lighter note, I figured I'd share with you all what has been keeping me busy lately. Embracing my natural old lady tendencies, I've been making a lot of crocheted stuffed animals. I made some for my neices and nephew... here's a couple of them :)
Harley's Dancing Panda & Super Mason Monkey.I made a white Jetta for Savannah with blingy pink hubcaps and headlights, but forgot to take a picture of it before I gave it to her.
I hope January has been treating you all well :) I'll let you know if I hear from UCSF and if I start on either of the trials.
Hugs & kisses!
Laurie
Saturday, January 8, 2011
Happy Anniversary to My Tumor!
It's a strange anniversary to celebrate, but 9 years ago today I found out that I had a brain tumor. That day I started mentally planning my imminent death. Who would have thought that I would have been doing as well as I am 9 years later??? I really do think it is a cause for celebration :) I've had 9 more years to make memories and live life than I thought I would have. It's not exactly the life I envisioned as a kid, but it has been fulfilling nonetheless and I wouldn't trade a single day.
Mason turned 19 yesterday... OMG I'm getting old! Mom & I are going to visit tomorrow to give him his bday gifts :)
No new news to report since my last post except that, as of Friday, they still hadn't gotten my pathology slides. Apparently Kaiser thinks they will have it by Monday. I'm not holding my breath, but keep your fingers crossed for me anyway!
Cheers!
Laurie :)
Mason turned 19 yesterday... OMG I'm getting old! Mom & I are going to visit tomorrow to give him his bday gifts :)
No new news to report since my last post except that, as of Friday, they still hadn't gotten my pathology slides. Apparently Kaiser thinks they will have it by Monday. I'm not holding my breath, but keep your fingers crossed for me anyway!
Cheers!
Laurie :)
Thursday, January 6, 2011
Aaahhhh, back to real life :)
As much as I enjoy the holidays, all the festivities, family and food, the quiet of early January is intoxicating! I've been soooo relaxed (aka lazy) this week. I'm loving it :)
I've finally heard back from both Kaiser and UCSF about getting enrolled in a couple clinical trials. It was really looking like I wasn't going to be able to do the first trial, let's call it Trial A, because they needed to find my original pathology slide, from my 2002 biopsy, that has a bit of my tumor on it. For this trial, they need to stain the tumor cells with something to see if my tumor has something that would get me approved for the trial. Basically, around 85% of brain tumors have whatever "it" is, and they need to make sure mine has "it". So it appears that someone at Kaiser dropped the ball over the holidays and I don't think anyone was even looking for it until earlier this week. I'm told that they think they should have it by tomorrow & hopefully UCSF can get their hands on it and get it tested by mid next week.
I spoke with Dr. Prados at UCSF yesterday and he asked how I'm doing, if I've had any new symptoms since stopping my last chemotherapy over a month ago. He sounded encouraged that I haven't lost anymore movement, so decided that we should continue trying to get me into Trial A. If I had started declining, he would have had me start on Trial B, just to get me on some kind of treatment. Trial A is a phase 2 study meaning that dosing levels have been already been determined and they are now trying to determine how effective it is. Trial B is just a phase 1 trial, meaning that it is still not exactly known to be effective and they would be increasing dosage to find the maximum tolerable dose. I think phase 1 trials are a lot tougher on the body. If it turns out that Trial A dosen't help me, then I can still do Trial B.
Funny timing... I just got a call from a lady at UCSF to schedule an MRI for next Friday, the 14th :) Yay, finally stuff is happening!!!
On a less clinical note, my dad is still hard at work finishing the basement for my new little studio down there. He's hired the same contractor who built our house to finish the bathroom and put in a cast iron propane fireplace, but Dad is doing a lot of the work himself. He's been out in his mancave building shelves for the bathroom and the mini kitchen. He bought a really cool old buffet/hutch that he is going to put the bathroom sink in so it will become the vanity. He's ordered all of the fixtures and yesterday we went to pick out the fireplace. It's been like Christmas all over again because he's ordered almost everything online so we have UPS & Fedex dropping off stuff daily :) I can't wait for them to get started!
Hope you all are getting back into normal life too :) Cheers to having a routine again!
XOXO,
Laurie
I've finally heard back from both Kaiser and UCSF about getting enrolled in a couple clinical trials. It was really looking like I wasn't going to be able to do the first trial, let's call it Trial A, because they needed to find my original pathology slide, from my 2002 biopsy, that has a bit of my tumor on it. For this trial, they need to stain the tumor cells with something to see if my tumor has something that would get me approved for the trial. Basically, around 85% of brain tumors have whatever "it" is, and they need to make sure mine has "it". So it appears that someone at Kaiser dropped the ball over the holidays and I don't think anyone was even looking for it until earlier this week. I'm told that they think they should have it by tomorrow & hopefully UCSF can get their hands on it and get it tested by mid next week.
I spoke with Dr. Prados at UCSF yesterday and he asked how I'm doing, if I've had any new symptoms since stopping my last chemotherapy over a month ago. He sounded encouraged that I haven't lost anymore movement, so decided that we should continue trying to get me into Trial A. If I had started declining, he would have had me start on Trial B, just to get me on some kind of treatment. Trial A is a phase 2 study meaning that dosing levels have been already been determined and they are now trying to determine how effective it is. Trial B is just a phase 1 trial, meaning that it is still not exactly known to be effective and they would be increasing dosage to find the maximum tolerable dose. I think phase 1 trials are a lot tougher on the body. If it turns out that Trial A dosen't help me, then I can still do Trial B.
Funny timing... I just got a call from a lady at UCSF to schedule an MRI for next Friday, the 14th :) Yay, finally stuff is happening!!!
On a less clinical note, my dad is still hard at work finishing the basement for my new little studio down there. He's hired the same contractor who built our house to finish the bathroom and put in a cast iron propane fireplace, but Dad is doing a lot of the work himself. He's been out in his mancave building shelves for the bathroom and the mini kitchen. He bought a really cool old buffet/hutch that he is going to put the bathroom sink in so it will become the vanity. He's ordered all of the fixtures and yesterday we went to pick out the fireplace. It's been like Christmas all over again because he's ordered almost everything online so we have UPS & Fedex dropping off stuff daily :) I can't wait for them to get started!
Hope you all are getting back into normal life too :) Cheers to having a routine again!
XOXO,
Laurie
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