Saturday, August 27, 2016

Weekend Update: The Good, the Bad and the Ugly

"What do you want to do?"
My husband asked me this question this morning. This week we got a lot of news related to my recent scans regarding Breast Cancer surveillance and it's been quite the roller coaster ride. Good news, bad news and finally, ugly news have had quite an impact on the Robinsons, and our circle of amazing friends who have stood by us through impossible challenges and amazing adventures. The decision of what to do comes to me and essentially boils down to this: Do I want to go out in a blaze of glory or fade away into nothing? 
If you know me, you already know the answer. 
However, as the news comes in, there are other considerations, primarily, my kids, my community and my stud husband. Everybody has a different answer. Everybody has a different expectation and the idea of loss does not fall short on anyone. So I'll put it to you: What would you do?
First, you will need some information. Here is the update of last week's news. 
Previously, we know that I had a Pet CT that was positive for either some sort of infection or a cancerous process. What we did not know is if it is a cancerous process, what kind is it? We also knew that my brain MRI came back positive for multiple lesions indicating a potential metastasis of cancer to my brain OR a new primary brain cancer. Before I go on to tell you the awesome findings (which I'm somewhat proud of), let me introduce you to my team. 
Meet Dr. Mark Moasser, graduated from Tufts University School of Medicine and completed his residency at Cornell Medical Center in New York and Memorial Sloan Kettering Cancer Center. He specializes in HER-2 positive breast cancer, conducts research and clinical trials on therapies related to key signaling pathways that drive the development of breast cancer  and that drive drug development.  He is a Professor at the University of California San Francisco, Biomedical Sciences Program. He is also the author of numerous publications, scientific and clinical on Breast Cancer and he works with big hitters like the National Institute of Health, the Susan G. Komen Foundation, California Breast Cancer Foundation, and is on the editorial Board of the Journal of Clinical Oncology. 
He doesn't suck. He calls me on Saturdays too which makes him as human as he is smart. He will be handling all of my body-related therapies that target my recurrence.  
We have added a new rockstar to the team this week. Introducing Dr. Patricia Sneed. Dr. Sneed graduated from Stanford University School of Medicine and completed her residency in radiation oncology at the University of California, San Francisco where she remains a Professor in residence. Her specialty? Breast Cancer metastasis to the brain. She is also the co-director on the panel for Gamma Knife Radiosurgery specializing in that procedure which might just come in handy later. Her publications are widely cited and she continues to do research and report findings in Journals of oncology and radiation oncology. 
She's  a stud.
Both of these physicians are essentially, the good news. 
The bad news is my tissue biopsy confirmed the return of my breast cancer. I have graduated to Stage IV with widespread evidence of the disease throughout my head, chest and abdomen. I am officially a breast cancer "lifer" which means I will be fighting this disease until the inevitable end of my life. 
And now for the ugly. After meeting with Dr.'s Sneed, Lloyd and a perky, Asian Med student named "Namu," I was informed that the brain lesions were far more "numerous" than originally reported. 
I love residents. They hate giving bad news and they're really terrible at it. Either they blurt out hideous news that makes patients crumble, or they pussyfoot around the truth in an effort not to provoke an emotional response. Dr. Lloyd falls into the latter category. He tried to use terms like "numerous" or "multiple" until he finally slipped and said "a lot." We asked the three of them how many lesions we were actually talking about. 5? 7? 10? Dr. Sneed reported, "more like 50." Apparently, they stop counting after a certain point because they can't remember which ones they actually counted but for giggles, I sent her and her resident back to actually count. They lost count at 100... That's kind of a bummer. My brain is riddled with very small lesions and her expertise confirms breast cancer metastasis.
Why is this important? Because denial is a powerful force and I want proof. If it walks like a duck, floats like a duck and quacks like a duck,  I want smart people to confirm that this is, in fact, a duck. 
Because there are so many lesions, I do not qualify for Gamma Knife Radiosurgery, her specialty. Gamma knife is precise and in my case, they can't possibly pinpoint each lesion. Instead, she recommends whole brain radiation. Whole brain radiation means they bolt my head to a table and zap me with all kinds of waves from outer space. This is what sucks being a nurse. You know what they are going to do before they do it. Whole brain radiation carries side effects of certain hair loss and possible short-term memory loss. However, personality usually remains intact (woohoo!)
"If I do nothing?"
"You will be dead in 2-3 months."
Honesty is the best policy.
Okay, so to recap, I've got a headful of budding, baby cancer, a bodyful of slow-growing cancer and a sassy attitude. (That's a bonus)
What would you do? The picture looks dismal, right? 
Well, Dr. M recommends a hormone therapy that, as of April 2016, has had phenomenal results in managing indolent breast cancer recurrence. This means it makes my cancer calm down and stop spreading. Dr. S recommends whole brain radiation and both doctors seem to think I have a positive prognosis of greater than 3 years with a top end of 15-20. The difference depends on whether or not I respond to treatment. 
How do I feel? Well, mostly normal. I can honestly say that the inside picture does not match the outside and other than feeling a little spacey, most of my parts are still in working order. I won't lie. I'm sad. I was really enjoying the Pro Leisure Tour, spending my retirement on plane tickets and trips to Park City, and watching my kids grow into amazing soccer players and teenagers. It's hard to give some of that up. I say live hard and fast, and die beautiful, but it's not about me anymore. It is ALL about the people I love and cherish and even the brilliant doctors working overtime to save my life. If they actually prolong it, maybe they can save someone else. Therefore, my dying would be slightly irresponsible and selfish. 
Self-preservation is a universal behavior with adaptation to the environment enhancing an organism's chance of survival. We strive to survive, but humans also depend on the attitude of hope. None of us are getting out of this life alive so why do we fight and is hope enough? Well,  in an environment of self-preservation, hope and goal achievement there is always the possibility that we as organisms will prevail. I've tried to pinpoint my own reasons for seeing this through and I have recognized two very important aspects of my personality that keep me from giving up. 
1. I'm stubborn. 
2. I hate losing. 
"What do you want to do?" was Marek's original question. As with anything, the answer remains the same. 
I want to win. Treatment begins September 15th. 

9 comments:

  1. Thank you for evoking every emotion that I have! Love you lady!!! #fight

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  2. Hey Tori, that you are going to meet this head on is a no- brainer... ( see what I did there?).
    What a special person you are and what amazing team you have surrounded yourself with. Here I include your wonderful husband and kids. And friends. We are behind you all the way, and would carry some burden for you if we could. With much love

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  3. Tori, not only are you stubborn and dislike losing, you are damn smart, beautiful inside & out, and inspirational. Kick grass!!! Love and hugs to all of you!!!

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  4. Tori, it's not how long, but how much you live. I don't know anyone who has lived more than you. As my own temple is crumbling a bit, I think "Well, I'll try to be as courageous as that little girl I got a frozen yogurt with in Kirkwood many years ago". Remember that? You are in our prayers.

    Paul Spurgeon

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    1. Honored Paul. Yes, and thank you for your kind words. As I am sure you know Courage is simply what you do with your fear. Keep moving forward. It's not the years in your life but the life in your years. I've still got a few left and I fully intend to add a few "line items." Not going down without a fight. I wish you well in yours and hope that as the "temple crumbles", you can manage to squeeze out a little fun and debauchery! Hugs and thanks.

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  5. I'm in. Sign me up for side-kicking, shopping, driving, listening to bad 80s rock-ing, whatevers. xoxoxoxoxo

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