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.