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.
LOVE YOU. XOXOXO
ReplyDeleteTori,
ReplyDeleteI pray that you are the one that beats this ugly thing called cancer, so that you can continue to rock this world and inspire all who are privileged to know you and how you fully live life...
Sorry to say I have more deep understanding of what you are going through than I ever wanted-and I am with you on not wanting brain radiation. Still, I can't imagine what it feels like to be you, but let me just say that even though we were never close friends you have my love, my strength, and any other help I can offer. Please give my love and regards to Marek too, and don't forget to tell people to support him too-he's got a heavy load to carry supporting you in the fight. That said, you are fearless, you are strong, you are living your story on your own damn terms and I admire you to the moon for that. Lots of love from Oregon-come see me if you are ever in the region. And fyi-our naturopath says a little red wine is good for you ;). best, Laura
ReplyDeleteTori, I wrote this long comment to you. Was crying. It dripped onto my phone which resulted in it shutting down. (Perhaps permanent damage) and gave up writing and was so mad because I had much to say. Then I left emojis on your page because there are no words. Then I read this again this morning to Dave and cried the entire, with my big fat belly shaking and think of you. It ain't over my friend. Life ain't fair but you sure have taught us all how to live. I shared your story with my close pals because what you said so deeply touched me that I wanted it to be a good reminder that life is finite. But I say we keep rocking it. I'm here for you my friend. Love to you, Marek, Zoe and Stella!
ReplyDeleteLove you. Sending lots and lots of love.
ReplyDeleteAnd so you fight...and we fight with you. And we love on your husband (in an appropriate way of course) and of course your beautiful girls. You are NEVER alone. We are all here for you always!!!! xoxoxo
ReplyDeleteI don't know you - but I'm praying for you.
ReplyDeleteWell shit. If there's anyone that can beat this (back, as you say) it's you! Tori, you inspire! You've tought me to live in the now, don't take it for granted because tomorrow is no guarantee. Who gives a rats arse if my house is a disaster and there's a million and one things I "should" be doing?!? I'm gonna live large! I don't really pray, but know that I'm sending you every bit of good, loving, healing energy that I can muster. ❤️ Barb
ReplyDeleteWithout words, and through a few tears after reading this: THANK YOU. You are a true role model. Real. But sooo good. I hate that you and your family are going thru this. It is not in vain. Hope exists. You are alive, and more living and alive than most. I will continue to support you and your beautiful family however I can. Warrior strength.... Xoxo Amber
ReplyDeleteWithout words, and through a few tears after reading this: THANK YOU. You are a true role model. Real. But sooo good. I hate that you and your family are going thru this. It is not in vain. Hope exists. You are alive, and more living and alive than most. I will continue to support you and your beautiful family however I can. Warrior strength.... Xoxo Amber
ReplyDeleteSending Love & Prayers for you are true fighter and you will won this battle!
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ReplyDeleteHello, I'm a Sparkpeople pal of your mother-in-law. I'm praying!
ReplyDeleteSending you lots of positive juju. Lots of love and hugs to you and your fight for life everyday! You are such a great role model for all of us!❤️
ReplyDeleteI am a friend of Kathy Cunningham's-also a friend of Ann Silberman who writes her blog, But Doctor, I Hate Pink. She is a many year mets survivor and she is thriving. While I send you all good vibes I encourage you to get in touch with Ann--she is a fountain of faith and information.
ReplyDeleteDear Tory, I am thinking of you and your girls and family, and believe in you, hang in please, you will beat it!
ReplyDeleteLove to all your family,Veronika
Hey Tori...we are soo bummed to hear this sad news but if anyone can beat this..its you! You're a survivor, a fierce fighter and an incredible warrior!! Attitude is everything and your attitude is a true inspiration to all of us. Can they do cyber knife radiation on you?! It worked miracles on my mom. She did it a few times at Stanford and it's amazing. Out thoughts and prayers are with you and your beautiful family and keep fighting the good fight..we know you will!! Xoxo Conneely family
ReplyDeleteDear Tori, Sending my prayers to you and the family to help you with the strong strength you have. My Angles will be on my family's shoulder at all times. Yes i believe in Angles. Just talk to them and they will answer you sooner or later. I pray for you every night. Very hard to write this still upset. Just Wanted to let you know i haven't forgotten you or my family i Love very much. Love Aunt Martha
ReplyDeleteTori, you will never know how much you inspire me, and how much I appreciate the love you've shown to Marek all these years. I thank you for the gift of my two grandkids… And applaud you for your courage as you face what lies ahead. As you say, you are an anomaly. And that's what it takes to beat this horrible disease. And, of course a miracle. And of course… We've all seen that happen!
ReplyDeleteYou, Marek, and the girls have all my love and support. I only wish there was something more I could do.
Kathy