We left Arizona for Massachusetts for a family vacation on July 6th not really knowing if I was going to live or die and my life was literally flashing before my eyes. My doc gave up on me for whatever reason and looked me in the eyes and told me I had maybe 6-12 months to live. My cancer had taken over more than 50% of my bones and had spread (as we already knew) to other areas of my body. They also thought I was a rare and difficult case.
How the hell do you process this? What the hell do I do first? I wasn't ready to die. Crap, this sucks.
Jeff and I dove into action, again. This time it was to update our wills, we talked with our kids and told our closest friends and family what my doctor told us. I visited Sleepy Hollow Cemetery and picked out our interment spots in the town we spent growing up, where we shared a special bond. We thought if we just got everything in order then we could set it on the corner of our desk and live out what little time we had left together. Isn't that what you're supposed to do when the chips are down and you've been told you had only a mere 12 months or so to live?
Fast forward to the same afternoon when we came home numb and crying and hanging onto each other like it was our last night together.
Not surprisingly, I had connections at Dana Farber Cancer Institute. I didn't really know them in person, but I had met them via a weekly twitter chat that I frequented about Metastatic Breast Cancer. I had known enough about both of them to know that I trusted them with my life. Sounds super dramatic but I did. These were 2 doctors and cancer researchers and one is a cancer survivor herself who I admire greatly. I trusted them enough to send them my spit in a kit and give them authorization to use my cancerous tissue in a Metastatic Research program (mbcprojrct.org) so that could help others in my shitty cancer situation. I reached out on a Friday afternoon in a private twitter message and by Saturday morning I was told I had an appointment with the head of the Dana-Farber Cancer Institute in Boston. Incredible, amazing, okay, we'll be there, July 14th.
To try to make a long story short, we went to Dana-Farber and we met the doctor and fellow who would give me hope and agree to take on my case and guide my care closely and carefully. We learned that I am not a rare case at all but the reason why I have Stage 4 metastatic cancer is rare. I have what was they referred to as "An interesting array of genetic abnormalities" and that's quite fine with me.
All I know now, after being in the hands of Dana Farber and given a plan and a direction and an understanding of where I really am in this big game of LIFE, is that I may just be okay. I may be able to plan things again without the fear of dying getting in the way. We leave Friday to go back to Arizona and I'll be armed with 2 oral prescriptions and orders for pain & side effects management and an appointment to be back in Boston in 3 months. My care will be co-managed with my doc in AZ and life will go on.
I haven't quite digested what all has been presented to me just this morning, but I do know that I'm not meant to die yet. My journey isn't over. My job isn't not done. Whatever it is, I will take it.
As cliche as it sounds I have been given the gift of time. I know what's important in life. I've been thriving for 3+ years and I intend to keep doing what I am doing as long as I am able and so I get to live life to its fullest and keep checking the boxes.
And I thank you so much. My family, my friends, strangers who have prayed and sent me positive juju. I am one of those people who believe in the power of positive attitude and prayer and all that stuff. I don't know what else to believe in.
I'm alive and hope to stay this way a while. Life is for the living so bring it on.
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