I hope you all had a wonderful Christmas/Hanukkah/Kwanza/Festivus!!! My family & I celebrated Fiddlemas a few days before Christmas, here in Fiddletown. We started this tradition a couple years ago because my neice, Savannah, has to go to her dad's house by noon on Christmas, so Fiddlemas gives us a chance to spend a lot of time with her. This year we did a white elephant gift exchange with all the kids and had a lot of fun. The big hit was the bumble bee pillow pet that Mason opened, I stole from him, and Harley stole from me :) Luckily, Harley got me a bumble bee pillow pet for Christmas, so now we both have one! We celebrated Christmas day at my sister's family's house and had an awesome prime rib dinner, mmmmmm! We also had a Shrek marathon. We watched the first 2 movies because my dad hadn't seen any of them. He must have loved them because I don't think I've ever seen him sit for that long. It was a super fun/lazy/relaxing day.
In terms of my medical condition, not a whole heck of a lot has happened. I fell a couple times in the last couple weeks. I'm pretty unsteady on my feet and get off balance a lot. Being on blood thinners, they've told me to go to the hospital if I fall, but luckily neither fall was all that bad and I just ended up with some pretty ugly bruises. I was told that I didn't need to see a doctor.
I heard from my Kaiser oncologist that my blood test passed to get me enrolled in the second clinical trial that I described :) I'm still waiting to see if they can find the slides of my tumor from my biopsy way back in 2002. Apparently it is somewhere in storage at Kaiser Redwood City where the biopsy was done. They need to put a stain on the tumor cells to check for something (I'm not sure what, a certain protein or some other biology thing that I don't understand) to see if I can be enrolled in the first clinical trial. Apparently like 85% of tumors do have whatever it is, but I can't be in the trial until they have proof. So, in the meantime, we're just in waiting mode.
Last night, my mom & sister and I had a mother/daughters night out and spent the night at a hotel in Sacramento. We went out to dinner at the Melting Pot (fondue, OMG!!!) and, as usual, had an amazing dinner there! For dessert, we had white chocolate creme brulee fondue... holy moly, it was friggin amazing :) It's a chain, so I would recommend googling it, finding one close to you, and running at top speed to have an orgasmic meal that you won't forget. It's not cheap, so if money's a little tight these days, go to Taco Bell for dinner, but splurge for dessert there.
Planning on a nice, chill evening at my friends, Supriya & Jeremy's house with Erin to ring in the New Year. A good dinner, some music, some board games... just what the doctor ordered :) Not the crazy party of my good ol' college days, but who has the energy for that anymore? I like just hanging out with good friends these days.
Happy New Year!!!
XOXOXOXO,
Laurie :)
Thursday, December 30, 2010
Friday, December 17, 2010
At least a little something to celebrate :)
After all the doom & gloom of last night's blog, I thought I should write about some good news I got today. I had to drive in to Sacramento this morning to get my blood checked for the anticoagulant I'm taking for my blood clot. They had me giving myself shots of a fast-acting blood thinner as well as taking Cumadin pills, which take a couple weeks to reach their full effectivness. I found out this morning that my blood levels have reached where they should be, so no more shots, yay!!! You should see my belly! That's where I had to give myself the shots & it's covered in quarter sized bruises. They don't hurt, it just looks super creepy :)
It was also nice today to get to drive myself to Sacramento. My mom has been amazing and has basically been my chauffer, to and from all of my appointments, and has not complained for a second! I wanted to give her a day off today so I drove myself with no problems, though my leg started swelling a little, so I probably won't do it too often.
On that note, after reading over my last post, I realized that I had neglected to acknowledge how remarkable my parents are. They have been going through this physical & emotional roller coaster with me and we have laughed and cried together and they have been nothing but stellar friends, companions and care-givers for me. My dad is furiously making plans to finish our basement so that I will have my own little apartment down there and my mom makes and serves me most of our meals, gossips, shops & watches TV with me and takes care of Horch and my 2 kitties (yes, they have inherited all 3 of my pets). All of our lives are wrapped up in this, and they have not complained once (at least not to me!). I'm so friggin spoiled! I just needed to put that out there :)
It was also nice today to get to drive myself to Sacramento. My mom has been amazing and has basically been my chauffer, to and from all of my appointments, and has not complained for a second! I wanted to give her a day off today so I drove myself with no problems, though my leg started swelling a little, so I probably won't do it too often.
On that note, after reading over my last post, I realized that I had neglected to acknowledge how remarkable my parents are. They have been going through this physical & emotional roller coaster with me and we have laughed and cried together and they have been nothing but stellar friends, companions and care-givers for me. My dad is furiously making plans to finish our basement so that I will have my own little apartment down there and my mom makes and serves me most of our meals, gossips, shops & watches TV with me and takes care of Horch and my 2 kitties (yes, they have inherited all 3 of my pets). All of our lives are wrapped up in this, and they have not complained once (at least not to me!). I'm so friggin spoiled! I just needed to put that out there :)
Thursday, December 16, 2010
My, How Time Flies...
Ok, so I think that it is well established that I am not the most consistent blogger. I really am sorry about that, considering most of my blogs involve my dealings with cancer. I imagine that those of you who don't talk to me regularly wonder if I'm not blogging because I've lost my fight. Luckily, that is not the case. As I've said before, I'll try to be better at it :)
So what have I been up to the last nearly 3 months that has kept me from blogging? To be honest, I don't really have a great answer. A couple lame excuses...
1) Moving was incredibly stressful on me. I've never felt so helpless and useless in my life. My main packing day before the moving van and my very awesome dad and brothers-in-law came to move everything for me, my mom came to help me pack up the last of my stuff. After getting super frustrated and exhausted because I couldn't move around or carry anything, I had a major breakdown & my mom called my sister to come help us, from 2 hours away. Dena rushed over and totally saved the day. From that point on, all I could really do was watch everyone else do everything for me, of course on the hottest day of the year. My brother-in-law, Ken's brother Randy is REALLY allergic to cats, dogs and dust. Of course, under everything that was moved in my apartment was enough cat hair, dog hair and dust to stuff a mattress, comforter and 2 oversized pillows. By the time we finally got to Fiddletown & they unloaded everything, Randy's poor eyes were swollen shut & I think all of his body fluids were flowing out his nose. And he didn't complain once! I truly have the best team on my side & I'll never be able to pay them back for the hell they went through that day.
2) Going up & down stairs is pretty hard for me now, especially with anything in my hands. When I first moved to FT, I had taken my computer downstairs, where my files are, to pay my bills and I left it down there. As incredibly sad as it sounds, it sat down there for about 2 weeks because I didn't have the energy/will to actually go down & get it & I was still trying to be defiantly independent so I didn't want to ask Mom or Dad to get it for me. I just was in anti-computer mode for a while & didn't even check my email. I think I definitely went through some depression my first few weeks living here. Not because it isn't a wonderful, peaceful place to convalesce, but because I really felt like I was encroaching on my parents' retirement dream and that I had to become dependent on them. I felt that it was not fair that they should have to help me out so much and that they deserved to have a break after working and raising kids all their lives. Of course, I still feel that way, but I've come to terms with the fact that we don't have a choice & I think we've found a nice comfort with each other where they allow me all the private time I need in my bedroom & we all enjoy each other's company when we're together. Now I can't imagine living by myself anymore in my dark little apartment. This is really where I need to be, for me and for them :)
The reason I am finally blogging again is that the last couple weeks have been very crazy and I have some kind of bummer news to write about (plus I finally got the stupid computer up into my bedroom). I had an MRI, the 2nd one I've had since I started Avastin, on December 1st. I didn't get a call from my oncologist until almost a week later and it turns out that, unfortunately, Avastin doesn't seem to be working anymore either and my tumor has grown slightly. This was pretty much the end of the road in terms of conventional, FDA approved, treatments for brain tumors, but I have already seen the neuro-oncology specialist, Dr. Prados, at UCSF, and he is working feverishly with my Kaiser doctor, Dr. Grennan, to get the tests and referrals and medical records he needs to enroll me in a couple clinical trials. The first one we're going to try is a phase 2 trial and it requires that patients have no more than 3 recurrences of their disease. Since I am on my 3rd, this is the only time I can do this trial. If I tried something else first and it didn't work, I would no longer be eligible for this one. If this one doesn't work, there is a 2nd trial that they are already trying to approve me for, that will take patients in any stage of disease.
I realise that I'm kinda working on borrowed time at this point, but I haven't given up yet. I've had lots of frank and open discussions with my parents about the coming months or, hopefully, years and my pending death. Amazingly, I think it has helped bring us some peace. After many tears, we're able to discuss what my final wishes are without sobbing. We've been going through this for 9 years now and my doctors think I'm a miracle. The other day, a nurse at UCSF saw that I was diagnosed in 2002 and she almost fell out of her chair. Apparently they rarely see brain tumor patients who live as long, and as well, as I have. Under the circumstances, I think we're doing really well and we're able to have fun and keep laughing through it all :)
On top of everything, on Friday I found out that I have a blood clot in my left leg, yay! So now I get to give myself injections of blood thinning medicine for a couple more days & get my blood checked every couple days, which requires an hour long drive into Sacramento. Luckily I had all day today to sit on my butt and finally do some emailing and blogging! My plans for the night are to continue my doctor ordered laziness by crocheting and watching some tube. It's kinda nice to be a little old lady at 35 without having the years of getting old to make me all mean and nasty.
I'm sorry to inundate you all with kinda crappy news, and just before the holidays. Just know that I am happy and really looking forward to spending some nice time with my family over Christmas. I'm baking cookies and bread on Saturday with my mom and Erin & am actually more in the holiday spirit than I have been in a long time :)
I hope you all are doing well and, though my intention is to write again before Christmas, I am going to wish you all a Merry Christmas now, since we all know my track record!
Hugs & Kisses,
Laurie
So what have I been up to the last nearly 3 months that has kept me from blogging? To be honest, I don't really have a great answer. A couple lame excuses...
1) Moving was incredibly stressful on me. I've never felt so helpless and useless in my life. My main packing day before the moving van and my very awesome dad and brothers-in-law came to move everything for me, my mom came to help me pack up the last of my stuff. After getting super frustrated and exhausted because I couldn't move around or carry anything, I had a major breakdown & my mom called my sister to come help us, from 2 hours away. Dena rushed over and totally saved the day. From that point on, all I could really do was watch everyone else do everything for me, of course on the hottest day of the year. My brother-in-law, Ken's brother Randy is REALLY allergic to cats, dogs and dust. Of course, under everything that was moved in my apartment was enough cat hair, dog hair and dust to stuff a mattress, comforter and 2 oversized pillows. By the time we finally got to Fiddletown & they unloaded everything, Randy's poor eyes were swollen shut & I think all of his body fluids were flowing out his nose. And he didn't complain once! I truly have the best team on my side & I'll never be able to pay them back for the hell they went through that day.
2) Going up & down stairs is pretty hard for me now, especially with anything in my hands. When I first moved to FT, I had taken my computer downstairs, where my files are, to pay my bills and I left it down there. As incredibly sad as it sounds, it sat down there for about 2 weeks because I didn't have the energy/will to actually go down & get it & I was still trying to be defiantly independent so I didn't want to ask Mom or Dad to get it for me. I just was in anti-computer mode for a while & didn't even check my email. I think I definitely went through some depression my first few weeks living here. Not because it isn't a wonderful, peaceful place to convalesce, but because I really felt like I was encroaching on my parents' retirement dream and that I had to become dependent on them. I felt that it was not fair that they should have to help me out so much and that they deserved to have a break after working and raising kids all their lives. Of course, I still feel that way, but I've come to terms with the fact that we don't have a choice & I think we've found a nice comfort with each other where they allow me all the private time I need in my bedroom & we all enjoy each other's company when we're together. Now I can't imagine living by myself anymore in my dark little apartment. This is really where I need to be, for me and for them :)
The reason I am finally blogging again is that the last couple weeks have been very crazy and I have some kind of bummer news to write about (plus I finally got the stupid computer up into my bedroom). I had an MRI, the 2nd one I've had since I started Avastin, on December 1st. I didn't get a call from my oncologist until almost a week later and it turns out that, unfortunately, Avastin doesn't seem to be working anymore either and my tumor has grown slightly. This was pretty much the end of the road in terms of conventional, FDA approved, treatments for brain tumors, but I have already seen the neuro-oncology specialist, Dr. Prados, at UCSF, and he is working feverishly with my Kaiser doctor, Dr. Grennan, to get the tests and referrals and medical records he needs to enroll me in a couple clinical trials. The first one we're going to try is a phase 2 trial and it requires that patients have no more than 3 recurrences of their disease. Since I am on my 3rd, this is the only time I can do this trial. If I tried something else first and it didn't work, I would no longer be eligible for this one. If this one doesn't work, there is a 2nd trial that they are already trying to approve me for, that will take patients in any stage of disease.
I realise that I'm kinda working on borrowed time at this point, but I haven't given up yet. I've had lots of frank and open discussions with my parents about the coming months or, hopefully, years and my pending death. Amazingly, I think it has helped bring us some peace. After many tears, we're able to discuss what my final wishes are without sobbing. We've been going through this for 9 years now and my doctors think I'm a miracle. The other day, a nurse at UCSF saw that I was diagnosed in 2002 and she almost fell out of her chair. Apparently they rarely see brain tumor patients who live as long, and as well, as I have. Under the circumstances, I think we're doing really well and we're able to have fun and keep laughing through it all :)
On top of everything, on Friday I found out that I have a blood clot in my left leg, yay! So now I get to give myself injections of blood thinning medicine for a couple more days & get my blood checked every couple days, which requires an hour long drive into Sacramento. Luckily I had all day today to sit on my butt and finally do some emailing and blogging! My plans for the night are to continue my doctor ordered laziness by crocheting and watching some tube. It's kinda nice to be a little old lady at 35 without having the years of getting old to make me all mean and nasty.
I'm sorry to inundate you all with kinda crappy news, and just before the holidays. Just know that I am happy and really looking forward to spending some nice time with my family over Christmas. I'm baking cookies and bread on Saturday with my mom and Erin & am actually more in the holiday spirit than I have been in a long time :)
I hope you all are doing well and, though my intention is to write again before Christmas, I am going to wish you all a Merry Christmas now, since we all know my track record!
Hugs & Kisses,
Laurie
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