Dec 9th 2016
Something usually happens, though, that makes me change my mind. I read this article from a woman in one of my brain mets support groups. I cried, and was touched, and the whole thing just felt like my story, too.
"Albert Einstein is quoted to have said, “There are only two ways to
live your life. One is as though nothing is a miracle. The other is as
though everything is a miracle.”
I’m still choosing to live a life of miracles, but I’m honestly saying that it’s not easy."
I posted in my group and tagged Vickie, saying how much I loved the authenticity and honesty in her article. She didn't respond. This was a bit surprising, as she is pretty active. The article was written on October 3rd. Vickie passed away unexpectedly 11 days later, on October 14th due to complications from her liver mets.
It made me realize how valuable it can be to others to talk about your diagnosis. How much it can mean to others to read that someone else is going through this too. When I start feeling isolated I remember how not alone I am. How many women are living with this disease. How hard it's been to act normal all the time, and how I don't have to live that way. I think the fear I feel keeps me trying to live my life as if nothing is wrong, but the truth is, this isn't going away.
It's a hard life, trying to act like you're normal; when really you've had a raging headache for hours, you started your day by inexplicably throwing up, you've had to (literally) run to the bathroom a few dozen times and you've gotten maybe 3 hours of sleep. Top it off with bald patches that likely will never grow back and an entire closet of clothes that no longer fit you; well, let's just say some days I don't feel like a bundle of joy anymore.
Most days, I push through, do the socializing thing, and when I climb into my bed at the end of the day, I just close my eyes and lie there and finally let go. No more wig, or pencilled in eyebrows, or bending down with knees that can no longer support me, or things that just don't matter. Just me, Jeff and Mavvy. I think to myself almost every night how no one could understand what I've gone through. What I'm going through. Isolation.
It's been going on like this for a few months now. I kept thinking how I needed to pull myself out. Well, here I am, digging myself out of the premature grave.
I think realizing you need to change is always the first step to solving the problem. The second step is understanding how you're going to get there.
Here's my first step, I guess.
I've had some positive appointments recently: my scans continue to be stable from the neck down and the fact that I don't need to go for chemo weekly anymore (every 3 weeks now, and just a maintenance treatment), has been amazing. My brain scans came back with minimal swelling and all lesions either significantly smaller or not existent.
I have been having inexplicable side effects though - intense nausea that lasts all day long. Most days I can't wake up without being sick, and some nights as well. It is hard to be motivated to do very much when you're constantly feeling sick, but I've managed to push through and had a lovely birthday in Montreal and my apartment is fully decorated for Christmas.
I remember this day as if it was yesterday, still writing this post. I concluded my words didn’t matter enough to finish, and besides, I was too sick - confused - when in one minute I felt incredibly hopeful only to come back to this feeling horribly hopeless. I guess that is my definition of an MBC life....
Not much has changed since December 2016, more failed treatments and more brain radiation. Everything comes back around.
Sam
