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?!?!?
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