Wednesday, July 15, 2009

"Laughing With" Regina Spektor

Time Away

This blog is going through a metamorphosis as am I.

I now know what it is like to lose my mother. Nothing prepares you, no one has the words, nothing fills the void or can make it better again ( sort of like a mother can) but...

life goes on...

it's hard, it's different, but we don't hide in a dark corner of our closets, we go about life, in a different way with a different state of mind. At least this is the effect it is havig on my little life.

What has happened to me? Still healing, I am sure I will be healing the rest of my life here on earth. But I got engaged on April 17, my mom passed away on April 22 ( reading that last line is a reality check that I do not comprehend completely yet) and I was able to tell my mom my good news. She was hardly talking at that point, very weak, hardly eating. But she mustered up tears and said in a whisper "you didn't have to do that" hmmmm, did she understand what I was saying? Did she hear me correctly, I think so....I hope. I have heard that hearing is the last to go and some say it even improves as we appraoch the end. Greg ( my faince) and I had been together for 6.5 years and I knew she was wondering when it would be official. It meant a great deal to me to tell her before she passed into the life that is her's now.

Tears are streaming down my face, because this is a fresh wound still, it's almost a chest wound, right where my heart is. Some days it's soccer ball to the gut and I can not breath. I could write for days about the roller coaster of feelings, the questions of life and what is waiting, how I am supposed to live mine without her in it. There are days I sing in the shower and days I baul while vacuuming. One moment it's daily routine and next BOOM--thunder clouds roll in and I am crying in the grocery store. What's "normal" right now. Nothing and what is normal about the way I am handling all of this--everything.

I find comfort in music, in books by Dr Raymond Moody, I just bought a couple books by Deepak Chopra, I found peace in Sequoia National Park where I just went for a 6 day hiking trip with Greg and company. Mother Nature has a way of putting things in perspective... I find peace in the eyes of my dogs, and Greg's hugs and my dad telling me "I love you" more than I can remembering him tell me before, I find peace knowing that my mom's destiny is my own.

my life has taken a great turn. My family's life will be forever changed. There is a Mom Void in the world and nothing will fill it. But there is no choice but to move on...and have some good days and bad.

time is a healer.

p.s. I am Regina Spektor fan. Her new album just came out "Far" The song, "Laughing With" is amazing and hits home. please take a listen to this track, if you have the time.

all for now...

peace to all

Saturday, April 4, 2009

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 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.

Sunday, March 22, 2009

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

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...

Sunday, March 8, 2009

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...

Saturday, February 28, 2009

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?

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...