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
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