Hi Everyone,
Please read this to the end because I started writing it a couple weeks ago and a lot has changed (for the better) since I started writing it...
This is the blog post that I have been dreading writing. I've written similar ones in the past, but, unfortunately, this one seems more final and real than my previous bad news posts :(
My family and I had an appointment on April 9th with my oncologist and it looks like my streak of good luck and good science in trying different drugs and therapies to fight or kill my stupid brain tumor may unfortunately be coming to an end. My dad has been wearing himself out for the past few months looking for clinical trials that I might qualify for but, unfortunately, there aren't any that look promising. Either I don't qualify for them or they are phase 1 trials which are just trying to figure out dosing amounts and toxicity levels, so they'd be shooting me up with as much of the drug that my body could tolerate and that's not exactly how I want to spend my last few weeks or months.
My oncologist said that I probably have a matter of 2-3months. My dad has contacted Hospice to help us prepare for the future, so I am just going to immerse myself in my favorite things until we need their services... Appreciating what an amazing life I've had, my good luck at having been delivered into the best family I could have ever chosen for myself. A family who I can always count on to keep me laughing, usually at myself. My good fortune of having met some of the best people on earth and having the opportunity to call them my friends. As difficult and heart-wrenching as this journey has been, I almost think that everyone should go through a day when they believe their life is on the line. It is very humbling and really puts things into perspective, reminding you that the personal relationships you've formed are the only real things that count in the end. You can't take that fancy car with you, but I believe memories don't just disappear, they will be with you until the end of time. Whether I met you on a plane or a cruise, a few years ago, or 20-30 years ago or I've known you since birth, please know that I do think about all of you and wonder how you're doing and what you're up.
In addition to being grateful for the wonderful life I've had, I'm also thankful that I'm going to be going through this ordeal during baseball season so I can have my Giants distract me from reality. It probably sounds callous to someone who hasn't been a die-hard fan of a sports team, but I know at least a few of you out there know what I'm talking about. There is nothing like a nail-biter to distract you from a crying baby, a hot pan on the stove, or succumbing to a 15-year battle you've been having with a f*%#ing brain tumor that just doesn't know when to call it quits. I'm finally waving the white flag, I surrender, :(
On second thought...Screw that I'm not a quitter!!Ok, so it took me 7 years to graduate from college, but I did eventually get my degree. I believe in miracles. I am living in reality and I know my odds aren't good, but why give up when it really does me no harm to keep up hope??? Science is always evolving, right???
I keep thinking of Magic Johnson, who was considered a walking dead man when he was diagnosed with HIV in the 80's and he's still alive and thriving decades later.
I also keep having this dream of a dark concrete room with a guy sitting against the wall with his legs pulled up to his chest and I'm hoping he symbolizes my cancer in a cell, waiting for its punishment, things not ending so well for it.
In the last couple days, my Dad and I have found a couple reasons for some new optimism!
1) There is a clinical trial at Duke University for brain tumor treatment that shows so much promise that it was featured on 60 Minutes and was recently approved for fast-track status by the FDA! Check out the link below:
www.cbsnews.com/news/60-minutes-breakthrough-status-duke-university-cancer-therapy/
2)Because I was a long time survivor, and hoped that I could inspire recently diagnosed people to not consider it a foregone conclusion that they would be dead shortly and,that there was reason for optimism, a couple years ago,I spoke at a National Brain Tumor Association fundraising walk in San Jose and met a couple guys who were there to walk for one of their dads who had recently been diagnosed with a brain tumor. They were super smart Silicon Valley guys and had connections to some wealthy .com philanthropists. They told me that they were planning on starting a private lab, using already FDA approved drugs to do testing on individual cancer samples, so they could figure out a treatment for your particular tumor, without having to wait for years for a new drug to be developed.
These may be a shot in the dark, but they have definitely given me a renewed feeling of hope and optimism! Much better than waiting for my weekly visits with Hospice!
All my love and I'll try to keep you posted more regularly,
Laurie
Thursday, May 4, 2017
Subscribe to:
Posts (Atom)