a break from Brivanib

Bittersweet sums up my feelings right now.

I am home, my parent's home and things are ok. My dad, sister and I had a conference this morning. It involved some difficult information and some info I was not aware of. Though Brivanib has things stable with note of "possible shrinkage" on the report, my mom is weak and thin. The plan is to help her gain weight but this is hard because who knows what the activity is of that tumor (s) as well. Her primary tumor has doubled in size since Nov. but based on her CT scan after 6 weeks of Brivanib, it is stable. The plan is to send path reports on to the "big 2" cancer centers in the country, if you're reading this...you probably know which 2 I am referring to.

She had a saline drip yesterday to regain some fluids and according to my dad ( who is with her most of the time) she is much better in the last two days. Let's hope that remains the case and it progressively gets better with each day.

So Brivanib with a break is the bottom line. But while she is off for 3 weeks, we will not sit back and let what will be, will be. Maybe this should have been done earlier, but the decision is it will happen...we will see what the pros have to say...

I send this out with hope in my heart...I think seeing greener pastures and the warm spring sun shining reminds me that each day is a gift.

grades, spring and what's to come

I think I am finally done with my grades. It's a bit stressful but I need to remember that these aren't the grades that will keep them from getting into Duke or Harvard. I teach elementary Art and I have about 680 kids, 2-3 projects for the marking period and it can be overwhelming, especially when you procrastinate!

I talked to my mom today on the phone. Her voice is raspy, she's tired, and has lost 15 lbs since Nov. She's shaky and the local PA told her that he voice was raspy because he body was weak...oooook. Side-effect of Brivanib? I guess that means the muscles are losing their strength. She is on only 2 Vicodin a day and still on Fetonal patch ( sp?) She had to have a shot to increase her hemoglobin as well.

So the countdown is on for the Brivanib results. I believe she finds out on April 1. Part of me thinks, if she still has discomfort and pain from the tumor is her psoas muscle that it would slowly be diminishing, that's a long shot, I know, but if it's working wouldn't those symptoms go away? Maybe they are but her legs hurt cause they're weak from lack of excercise. She told me she thought she'd have to watch her up and down on the stairs. I have already been looking for Plan G or Plan H, I say this cause plans ABCDEF seem to have already happened(several chemos, surgery back in 2005, three clinical trials). I am pushing for my parents to go to the BIG 2 cancer centers in the country. Mayo Clinic is no chopped liver, but I just don't feel %100 about their expertise in her area of concern. Yes, they have sarcoma oncologists but sarcoma surgeons...no...

On another note, first day of spring yesterday and my sister's Birthday...Feels and looks like spring today in Michigan. Took the dogs for a walk in the state game area down the road and even through my stuffed up nose ( thanks to one of my students or several) I could smell the scent of spring....finally...

I think if I can pull Greg away from Penguins hockey that we might go look at hiking boots. We have plans for Sequoia National Park in July. I need to boots, my other ones are too bulky. I can not get excited for the trip quite yet. I don't know what my mom's situation will be and so far I am the only female going. I also like to wash my hair and bathe so backpacking is still something I am warming up to. I mentioned Sequoia to Greg because I am a bit tree-obsessed. I have looked at the photos of the giant redwoods and think I might be in my element on this one. There is something to say about standing amidst towering trees in a pine forest here, I can't imagine how I will feel surrounded by those beasts in CA...

In the meantime, while I finish grading and think of things to come, I will remind myself: one day at time though, don't get ahead of yourself, and enjoy the smell of spring and remember what this season stands for- a new beginning...

I found ACOR last week

So why I didn't know about this site earlier, I don't know. I think someone from the SA site mentioned it to me. I got on the liposarcoma mailing list and I can not believe all the e-mail exchanges, I am overwhelmed but in a good way. I am sharing all this info with my dad too.

What is true about sarcoma and a lot of cancers, is that each person's case is unique unto themselves and what works for some does not always work for others. That's the frustrating part, well there are A LOT of frustrating parts...but we try this and that and there is never a good answer, there are always just good guesses.

I am grateful for the ACOR website and I am grateful for weather that is feeling much more like spring too, with spring comes hope and new beginnings...a message I like to hold onto these days...

here I am, open to the world..

So I am an official blogger, inspired by the blogs of those that are dealing with the same cancer as my mom, sarcoma. Never heard of it? www.sarcomaalliance.com

I also look at this as an outlet for thoughts, experiences, and a life-journal. So what if it's for all to see? Hmmm, I am on Facebook, I guess that's for a lot of the world to see too. We're all little vulnerable creatures anyway, right? Well, here's to the internet, advancements in medicine and technology, and to being the little ant that I am! Hello World! It's me, Aubree...