Happy 2011!!!

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 :)

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 :)

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

The Great Cane Caper is solved!

OMG! I just had to write a quick post...

So my friend Kari asked me if I had received her housewarming gift yet, and I remembered that I had a note in my mailbox saying that I had a package at my apartment office. This morning I finally picked it up and she had found me the most badass cane with a dragon head and ruby red eyes! Though the coolest part... wait for it... is a real dagger hidden in the handle! We decided that it is going to save me both from falling over and from fighting off the Fiddletown Ninjas :)

Thanks a million Kari! Your concern for my safety and style are truly heartwarming!

xoxo,
Laurie, the Badass

What a friggin roller coaster this life is!

Hi everyone!

I'm going to apologize upfront for all of the exclamation points and smiley faces that will likely be in this posting.

I had an MRI last week to determine if my new treatments with Avastin are having any effect on my tumor and the results far exceeded my expectations :) I was hoping that the treatments would stop the rapid growth of my tumor, but had prepared myself for it to have little effect. Instead, I got an amazing voicemail message from my doctor Friday night saying that he was away at a conference, but he had gotten the test results and it said that it "showed improvement." He didn't go into any further detail, but that definitely got me super excited and allowed my parents and me to look forward to our appointment with the doctor today rather than dread it, not knowing what to expect.

The report is all written in doctor talk, but I can pick out some parts of it that I figure are good news: "The anterior posterior dimension... now measures approximately 30mm as compared to 53mm on prior MRI obtained in 7/21/10. The right parietal lobe no longer shows signal abnormality." I don't know about you, but something in that sounds pretty good to me :) "...degree of enhancement [has] markedly decreased since the last MRI." The doctor explained to us that what this means is that the brighter the tumor shows up on the MRI, the more activity it has in it. So this is saying that the tumor is less bright, therefore has less activity than before, therefore hopefully we're kicking its butt!

The one issue I have with the report is where it says, "Brain volume loss is noted." Hmmm, thanks guys, so you're shrinking my tumor, and my brain as well... fantastic! My doctor explained that brain shrinkage is normal as we age, but come on, in 6 weeks?!?! Really???

I also had my 4th treatment of Avastin today which went just fine, just like the others. I'm still trying to get used to my new brace. I'm walking a lot better with it, but I'm still pretty clumsy. I can tell I'm already losing muscle mass in that leg, but I'm hoping the physical therapist will give me some exercises to help me get stronger when I see her next week.

This weekend I looked for a cool cane in a few antique stores, but haven't found the right one yet. I've got a couple leads on some stores that may have the right one though, so I'll keep you updated on the Great Cane Caper :)

This Saturday I'm going to have a garage sale at my friends, Supriya and Jeremy's house, hopefully selling a ton of the junk I've collected over the years. Between the garage sale and donations, I'm trying to get rid of about 50% of my stuff so I won't have too much to move to Fiddletown on Sunday. It actually feels really good to go against my hoarding tendencies and simplify my life. I'm getting rid of 20 pairs of pants and probably about the same number of pairs of shoes. It's very liberating! I've already taken down most of my pictures and filled in the holes. I think this is the most prepared I've ever been to move. I'm nervous about moving to Fiddletown, I think for obvious reasons, but I'm also really excited about it. I love hanging out with my parents and every time I visit them, I always wish I didn't have to leave, and now I won't have to :) I think as long as I am able to keep myself busy, volunteering, visiting friends and working on rehabbing my leg, it'll be a great move for me. I plan on working on a few hobbies, helping my dad finish the room downstairs and perfecting a few cookie recipes to maybe start selling.

I have been reading the book, Johnny Got His Gun, about a soldier in WWI who had both of his arms and legs amputed, was left deaf from an explosion near him and had most of his face torn off leaving him blind and without a lower jaw or nose. It's really putting things into perspective for me... ok, I guess it could be worse :) I've been living with a brain tumor for nearly 9 years! I've had VERY few side effects from my treatments and VERY few physical complications from it. Until recently, I was working full-time and living independently. I have the world's most amazing family and friends and doctors and I really couldn't feel more loved and taken-care-of than I have been. I know I'm getting all mushy, but this has been a really great day and I've had a very fortunate life so far.

Ok, it is way past my bedtime and I need to read some more of my book so my brain quits shrinking. Hugs and kisses to you all!

Laurie ;-)

Little Nugget

Ok, so I just remembered a funny story that I think most of you will get a kick out of...

I went to my friend Barbara's wedding shower last weekend. Barbara and most of her friends are volleyball players, as in, played in college & still play, really good volleyball players. So Barbara is the shortest of them, at 5'10"! I kinda forgot about this at the shower cuz we were all sitting, eating and playing wedding shower games. Well, the team that I was on for one of the games wanted to take a picture with Barbara, so we all stood up and I felt like an elf in the land of giants! There were 4 amazingly tall, beautiful women surrounding my 5'2" ass! I looked like their mascot :)

I was on my way home from the shower & talking to my sister on the phone about it and I told her my Short Laurie story (because she can totally relate... she's the tall one in our family at 5'3"). For those of you who know who Chelsea Handler is, she's a comedian and has her own show with a "little person" as her side kick named Chuy, but she lovingly refers to him as her "Little Nugget". So Dena said that I was Barbara's Little Nugget. Thanks Sis! Love ya too :)

New Wheels :)

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

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

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

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

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

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

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