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. 

Bad News Travels fast.....

And now for the bad news....
Yesterday, I celebrated five years of survival. I was diagnosed exactly five years ago with a 49% chance of surviving 5 years. Determined to meet this milestone, I am elated to say that I am still here, thriving and surviving through the good nature of family and friends who have been with me every step of the way.
Unfortunately, celebration is short-lived and it's back to work. Today, I must break the news to all of these hopeful and wonderful people that while we made it five years, my fight is not over.
There is no cure for breast cancer.
This week, my petscan lit up like a christmas tree with multiple lymph nodes positive for hypermetabolic activity that most likely indicates a return of metastatic cancer. It is throughout my chest, lungs and abdomen with positive nodes in my neck and near my aorta. As if that is not enough to scare the heck out of me, my brain MRI shows roughly 5 lesions indicating metastasis to the brain.
I'm a nurse. Brain mets is never good news and treatment options are scary. "So you're going to aim that big gun at my head and zap my brain with radiation?"
Awesome.
Losing breasts was a "no-brainer" (ha ha, see what I did there?). Aiming toxic gamma rays at my brain is another situation altogether. I kinda like the way I think. I've spent a lifetime gathering knowledge, making mistakes, mapping movements and formulating opinions. I like my brain just the way it is, or "was" before my cells mutated and tried to eat it. My rockstar oncologist is doing the Texas 2-step trying to get me every treatment option possible by running more tests, sending my file to the rockstar radiologists (snipers) and rockstar neurologists (brains) and making me the latest and greatest cancer survivor poster child. I just spent five years convincing him that I'm a worthy cause. Now I'm hoping it's enough. Maybe I should have made latkes.
I'm not afraid. I knew going in that there is no cure to the plague of the 20th century. Being a nurse and seeing good people die and lives change prepared me for the inevitable. That's not to say, I didn't try. We switched to everything organic. I reduced my grains intake. I went vegan, temporarily, because let's face it, quality of life is an issue and when you eliminate the good stuff, life ceases to be worth the fight. I tried Paleo. I quit Coffee, sugar and alcohol. Yes, despite all this bad news, I have not had any drunken benders to make this last five years any easier. Okay, I went back to coffee when a study came out saying it's good for me and I needed a vice that was borderline. I don't drink soda. I don't smoke. I exercise a little or a lot depending on what the "experts" say. I don't wear deodorant and I gave up on beauty products altogether. I spent the last five years revisiting my hometown, reaching out to people I haven't seen in years,  and righting all of my wrongs. I have shared and processed feelings, reminded those I've loved that I still love them, and that their love has allowed me a happy, meaningful life of love and happiness with an amazing man I call husband and the gift of two gorgeous daughters, for which I am eternally grateful. I have sought to understand before being understood and tabled harsh feelings. I spent the last five years living as large and as hard as I possibly could realizing my time on this Earth is finite and when my time is done, no stone will be left unturned.
Despite these changes and efforts, cancer returns..... because there is no cure. You don't beat Cancer. You beat it back. You give it no hope for gaining a foothold and you pray.
Currently, we are waiting to see if I qualify for a special procedure that kills the tumors in my head without killing my personality. If I don't qualify, we go to plan B which has a high likelihood of making my hair fall out. Not fair that I happen to like having hair. Meanwhile, my oncologist wants the "neck people" to stick a very large needle in my tonsils and take a chunk of tissue that tells us whether this is a new cancer or the metastasis of breast cancer. And we are back on the rollercoaster folks. "Good news!" "Bad news!"
Meh.
My husband and my kids are taking this as best as anyone can. My close friends are on board and I hear the fear in their voices. I hate to ask this of my friends, my Facebook peeps, soccer families, high school pals, ski racing sisters, and posses from everywhere, but I need you more than ever.
What can you do?
Live. Live large. Live hard. Share pictures of your adventures, and if you see them, hug my kids. And if you can find a 20 year old Swedish Nanny for my husband, I'm cool with that. Meanwhile, I'll be fighting the good fight.... again, and hoping that one of these darn rockstars finds a cure.
Thanks for reading. Updates to come.