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Parenting with Metastatic Breast Cancer: Year One

About a year ago, I announced on this blog that I was diagnosed with metastatic breast cancer.

You remember? The fear, the anger, the immense community support. Am I jogging your memory? Or maybe you are new to Burlington Vermont Moms Blog and you have no recollection of this. Well, I’ve been bliggety-bloggin’ away over on my website maggiesbrightside.com, but if you haven’t started following me there yet then A. You’re missing out and B. Allow me to give you a quick update!

Living with metastatic breast cancer

Let me just get this part out of the way- I still have cancer. I know, you thought this was going to be one of those “she came, she fought, she conquered stories”. Nope. Sorry to disappoint. This is not that kind of blog post, but don’t worry, it’ll be okay. You’ll still feel uplifted, hopeful and proud at the end, I promise.

According to the Metastatic Breast Cancer Network, 6-10% of new breast cancer cases are Stage IV, or Metastatic Disease.

I am part of that statistic. If you know someone who has died from breast cancer, they had Metastatic Disease. This is the breast cancer people die from. Don’t google it. The statistics are terrible. What the doctors tell me is that there is no cure for Metastatic Disease… Yet. The plan is to keep me alive long enough to find a cure. I think we can do it. Research is progressing every day and we are getting closer and closer to a cure.

This is why it’s so important to know where your money is going when you donate! If “awareness” is your thing, fund that, but if you are interested in finding a cure for cancer, then fund research. Just my two cents. Breast cancer fundraising has been pinkwashed but it’s always important to know where your money actually goes when you donate.

Last year at this time, I started chemotherapy and felt pretty lousy. I had the standard of care for ER/PR+ Her2- breast cancer like mine. Dose Dense Adriamycin/Cytoxan (AC) and then Taxol. This is given in 8 infusions every two weeks. Every other week, on Monday, I would head to my doctor’s for my infusion. Every week, they would test my blood to make sure my white blood cell counts and platelets and my hemoglobin and my neutrophils were good enough. Chemotherapy ended on Martin Luther King, Jr. Day and then I let my body get a little stronger before we began my next line of defense.

ER/PR+ (*estrogen receptor positive/progesterone receptor positive) means that the breast cancer cells have estrogen and progesterone receptors and they need estrogen and progesterone to survive.

About 90% of the estrogen in women’s bodies comes from our ovaries and the other 10% comes from elsewhere. In order to cut off the “food” supply to the cancer (estrogen and progesterone), my ovaries were removed. This is called a Bilateral Salpingo Oophorectomy. Both sides, fallopian tubes, and ovaries. Bye guys, see ya later! It was nice making babies with ya! This simple outpatient surgery is helping me survive.

Since that time, I’ve been on a maintenance cocktail of a medication called Letrozole, which is what’s called an Aromatase Inhibitor and a medication called IBRANCE®, a palbociclib. Letrozole blocks the enzyme aromatase which converts the hormone androgen into traces of estrogen. IBRANCE® interrupts the mitosis of cancer cells. I’ll take these medications forever or until they stop working, whichever comes first.

When your doctor hands you an incurable diagnosis, you then have to decide how you will LIVE.

I make a choice every single day about how to live. Most importantly, I am working on my legacy which is in the hearts and souls of my children. I love my life. I love it so much that it hurts. When I think about how amazing and wonderful my life is and the fact that I might have to let it go I practically burst with the raw emotions that bubble inside of this temporary and fragile body. It’s not only sadness that is uncontainable- it’s all of the emotions because being able to simply experience these emotions is a blessing.

Parenting with a terminal illness is so hard. Every moment is precious and limited, and at the same time, I want to create some sense of normalcy for my children. I vacillate between wanting to give my kids the world, and not wanting to create monsters. My mind battles the importance of teaching them every single important life lesson that exists in the world, and just acting normal. I wonder if I’ll be here when my kids have their first loves, or when their friends betray them, or when they make a serious mistake they need support fixing. Will they remember that I make the best oatmeal or how I like to snuggle on the couch with them and write on Saturday mornings while they watch cartoons. I wonder if they will remember that “above all else, be kind” because I tried to tell them it repeatedly.

Van Duyn Family Under Rainbow

Photo By Paul Gamba Photography

I wonder how my husband will carry me with him when I’m gone.

I wonder what stories he’ll tell my children. He can’t possibly multi-task like I do so I narrate my daily chores when he is around, so maybe he will pick up on some of my idiosyncrasies- “I’m folding these clothes and putting them away so that I can refill the empty laundry basket with dirty clothes and bring it to the basement so it doesn’t clutter our bedroom.” I try to appreciate his quirks and not hold on to any resentment or frustration. I try to be compassionate with him as he too is parenting through this terminal illness. I wish that he could get inside my head because it’s lonely here, but I also hope he never has to experience this level of heartbreak. Who will his emergency contact be? Will he remember to relax, be patient and enjoy the moment because I try to tell him repeatedly.

I try to tell them and I write it down. I love and I love and I love.

I don’t think I’ll die soon. I’m a warrior. As a warrior, I face my life head on. We all have choices and most days, I choose positivity. I am angry and sad and broken and scared too, but I can’t let cancer reduce me to those feelings and I cannot simply survive. Even though I have a terminal illness, I’m choosing to live- to thrive. I still have a lot of living to do and I want to be happy and healthy and love life through it all. I want to hold my kids close. Even if I die from cancer, as long as I live life to it’s fullest, I’ve won this battle.

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12 Responses to Parenting with Metastatic Breast Cancer: Year One

  1. Kate October 28, 2016 at 11:36 am #

    Thank you for sharing, Maggie. You are so bright and wonderful and real. ?

  2. Maggie Van Duyn October 28, 2016 at 11:57 am #

    Thank you, friend!

  3. Shaman Mahalo October 28, 2016 at 12:30 pm #

    Maggie I honor you and your difficult journey. I am wondering what you have been advised or chosen to do to boost your bodies ability to fight this cancer. I read about all the medical approaches you are taking, but curious what else you may be doing to heal yourself in a natural way. I have faith that we all carry our own medicine. I send you love and heartfelt prayers for the miracle that you desire and deserve. ❤️ Reverend Shaman Mahalo

  4. Amy Spencer- Hayes October 28, 2016 at 12:49 pm #

    Maggie you are an amazing writer. Thank you for sharing your journey! You are one strong woman for sure!
    Amy Spencer

    • Maggie Van Duyn October 28, 2016 at 4:02 pm #

      Thank you so much Amy!

  5. Meagan buckley October 28, 2016 at 6:35 pm #

    Amazingly honest Maggie. sending lots of love!

  6. Meredith Bay Tyack
    Meredith Bay Tyack October 28, 2016 at 8:25 pm #

    I don’t know what I was expecting from this post … something amazing since I know you are a kickass writer (and human). But it surpassed my expectations! Amazing post and it showcases again what a strong woman, parent, and person you are. <3

  7. Jayme Rivas Robertson October 28, 2016 at 9:20 pm #

    This is fantastic writing, Maggie. Honest, pragmatic, hopeful and heartbreaking. I wish you all the very best.

  8. Heidi Chamberlin October 29, 2016 at 7:15 am #

    Uplifting but still had me in tears. Thank you for sharing your continuing journey. You are strong and amazing and have touched so many of our lives with your writing.

  9. Tracy October 29, 2016 at 8:40 am #

    Thank you, congrats on living a life that you love so much. It is our greatest gift to ourselves and others, to live fully.

  10. Anna October 29, 2016 at 12:57 pm #

    You don’t know me but I have been hearing of your journey from the beginning through our mutual friend shannon Boyd and at the same time have been going through a similar experience with a childhood friend also on the east coast. I hope you feel the love and healing energy pouring out of Oregon and know you have support in places and people you have never met. Your words are an inspiration for how we should be living regardless. Xoxo

  11. Suzy C October 29, 2016 at 8:42 pm #

    There is a fierceness in the nakedness of your human journey through this uncharted terrain that allows for nothing than the truth of your experience. The raw, conflicted moments of what is and what might be mediated by the power of choice, the decision to make the journey your way. Your writing beautifully carries the complexity of your intellectual and emotional complexity, Maggie. Most people, if they are lucky, have one gift of the other, either high intellect or a well-developed heart and spirit. You have been gifted with both Your writing is will be salve to our sisters who travel a parallel road. Your spirit a buoy when the seas are rough and there is danger in going under. You have all of our love and prayers. Life on special woman, LIVE ON!!

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