Metastatic breast cancer

On Friday, I found out the cancer spread to my lungs. Several little spots of disease are on both lungs, though it’s difficult to tell how many exactly, because some of these spots appear to be blood vessels-the size makes it difficult for the doctors to discern. I have at least one 1 cm mass in each lung. It’s odd, because I don’t feel anything with their presence. I found out Friday afternoon, and shortly after that phonecall from the oncologist (“There’s disease in your lungs, and no, there isn’t time to harvest your eggs, having a child isn’t an option for you since you’ll be in treatment for the rest of your life”) went on a 3.5 mile jog with my feelers out so to speak, to see if I could sense my new little insidious friends presence. Nothin. That’s what’s so bizarre. It’s an odd thing to be told that you’re essentially dying, and to not really resonate with that because physically you feel great. 

This is excruciating. To be told that treatment won’t end til the day I die, that that day is coming sooner rather than later most likely, that childbirth is no longer an option for me-at any age, this is a lot to swallow. But at 27, this feels like my life has been stolen from me. 

I know people want the feel-good, “but-I-turned-it-around-with-my-positive-attitude!” story, but I’m not there. Who knows if I ever will be. But one thing has become abundantly clear through these experiences: this culture really has no idea what to do with death, with illness, with darkness. We want a comforting story of how someone persevered and made it through the “other side”, because the alternative unsettles us to the core and brings us face to face with our own mortality. 

People have told me to “just try to live out the time I have and enjoy it.”

I know people mean well when they offer their advice, but this is really difficult to hear. It’s hurtful to hear from friends because it’s dismissive of where I am presently in this process of trying to accept that I’ve got more years behind me than ahead of me. At 27 years old. This isn’t easy news to swallow. There’s no “just”, in any of this-as if I can snap my fingers and will myself to accept that the worst case scenario is now my reality. Wish I could, but I’m human-like you, I have a normal fear of death, it’s just that mine is a bit more pronounced and center stage right now.  The advice is a bit cold…as if my impending death is something you’re able to easily accept, therefore I should be able to as well with no problems. I just was told this news on FRIDAY. That’s pretty insensitive given the magnitude of the situation. But that’s our culture. We deny the darkness even though it’s just as real as the light. 

I hope this changes someday. I hope that message is something I can instill in others before I go. We do ourselves (and others) no favors by evading the truth of our experiences-especially if that truth is dark. We all have darkness within us. It isn’t bad. What’s bad is that we are shamed for being in touch with and aware of its presence in this culture. We keep the darkness in the dark, which just allows it to consume us and isolate us. But darkness wouldn’t have such a grip on us if we allowed in light, in the form of human connection.  So, no, we don’t need to dwell in the darkness, but acknowledging its presence within us is honest and authentic-I trust it more than the Pollyannas of the world. We walk around like desensitized zombies in a world of distraction. We need so many distractions because so much of this existence IS incredibly painful. Or we are trained to be “Miss Mary Sunshines” on the outside because that’s what people want, regardless of how we feel on the inside. Denial denial denial. The truth is what interests me. 

It’s likely that I was actually metastatic at original diagnosis. There was a 2mm spec in the upper left lobe of my left lung in April. In the same location, there is now a 1cm mass. Nobody followed up on this when there was even a note that said “should be watched for metastatic disease given patients history of breast cancer”… when I brought this up to one of my doctors, he said it wouldn’t have really made a difference prognostically, because once you’re metastatic, regardless of the degree, the prognosis is generally the same. I suppose I can agree with that, though if I knew it was metastatic at diagnosis, I probably would have started chemo right away, and there would have been less spots to treat than there are now… 
They’ve recommended a really aggressive chemo treatment to try to knock down the lung metastasis. They seem confident that this will be successful. I still am not so sure. They had me scheduled to begin chemo TODAY, and I said hang on, guys, let me get my bearings and enjoy the gluttony of thanksgiving without a barf bag. They also hadn’t addressed the fact that my veins are horrible (they always require an iv tech for routine blood draws), so I will absolutely need a port. My white blood counts are also pretty low normally, and that’s a concern on chemo. I’m not going to just rush into something that has felt like violation to my whole self from the very beginning without these things in place.
Keep me in your thoughts and prayers. 

11 thoughts on “Metastatic breast cancer

  1. “The time you have.” That line strikes me as pretty fatalistic whenever it was said to me. Yes we all die sometime, but it sound like my fate is sealed – or in this case yours.

    Fight this with every emotion you have, be authentic in your experience it gives you more energy to keep fighting. Gather as much info as you can, they gave me the same line about no children ever, but the truth is there is still a chance it is smaller than most women our age but there is still a chance. Or there will be alternatives.

    Medically only one path is determined for now. But there is no telling how that path may go with all the different advancements made everyday. The rest of your life is up for you to decide.

    You got this! (And yes do enjoy Thanksgiving without the barf bag – the first treatment is the only one I ever had issues with food.)

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  2. Since I met you (a mere 6 days ago) you have impressed me with your honesty, intelligence ,and openness. You sweet Amy are not dying, you are living. Living on your own terms and making your own decisions. There may have been days behind and ahead that you may not feel strong but asking the tough question, doing your research and challenging your providers shows me that you have what it takes. You are wise beyond your years my friend and have quickly become someone I care about and admire. XoXo

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  3. I am posting this anonymously because I do not know you personally, but I have spent an hour now reading your blog front to back, and hoping that me telling you that doesn’t make you uncomfortable; I cannot imagine sharing such a personal, sometimes dark, journey with the world. I am sad, amazed, hopeful and inspired by what you have written and been through; but wishing I had words better suited and less cliche to explain how awesome I think you are after reading this (I don’t feel those do much justice). I genuinely feel like my outlook and perspective of things, and life in general, have altered just hearing your story and the things you have to say. I do not want to eat dairy anymore, I want to throw away my pink breast cancer mug, I really want to hug my mom. Maybe this is the cheesiest thing you have ever read, but I just really wanted to let you know that it was hard not to ache with you, or smile with you, or feel for you throughout. I am so grateful I came across your blog and had a chance to , in a sense, share this with you. With every inch of my being I am praying that you win, and I mean this from the bottom of my heart. In my opinion, really, you have already won.

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    1. I appreciate your kindness more than I can say. (My words also don’t do much justice)…☺️. Thank you for taking the time to read my entire blog. And thank you for your encouragement as I duke it out with these spots on my lungs. They’re small. So I think we can make them disappear. I’m more confident than I have been been about my situation. Thank you so much for your support, again. Your words made me blush and cry all at once. β˜ΊοΈπŸ’•

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  4. Amy…. You are truly one of the most amazing souls I have ever met and I am incredibly lucky to have the pleasure of knowing you. Reading these updates leaves me devastated, heartbroken, and angry, and I know my feelings far far far pale in comparison to what you are dealing with. You are never far from my thoughts, and I am never too far for anything you might need. If there is anything I can do for you, even just sit in silence with you while you process things, do not hesitate to reach out. I am down the street.

    Love,
    Meghan

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