I’m firing a warning shot. I’m about to lay down some serious content. If you are one of my many loved ones, you may not want to read this post, or even this blog. My life is very heavy and I’m weary under the weight of it. This is the primary reason why I started Stella Blue. I can’t hold in the words any longer and I need these pages, they are crucial to my mental health. To my loved ones, please consider reading this post by Lisa Bonchek Adams, a woman I’ve come to admire through her writings on living with metastatic breast cancer, and then decide if you want to continue.
Well, you’ve had your chance. Today I’m going to talk about death. I want to get this out of the way early in the history of this site to avoid any confusion. Yes, I’m dying. There, I said it and now you know. I don’t talk about this fact with many people, in fact I can count them on one hand. Depending on how much you know about stage IV breast cancer maybe you already knew this. For those that didn’t, I apologize for being blunt. Hopefully this will avoid any awkward questions you may have considered asking me in person. On the other hand, maybe it will raise more awkward conversations, I have no way of knowing. I am not going to apologize for telling you this, but I am sorry if it makes you uncomfortable around me, though I sincerely hope it doesn’t.
No one likes to talk about cancer, and especially about dying from cancer. It’s not an easy thing to wrap your head around when you’re 34 years old, let me tell you. I have spent long days in the cesspool of my mind chewing over this fact and what it means to me, and more importantly what it means for my family. I’ll probably write more about it later, but that’s not what today’s post is about. Today I just wanted to be honest with you, to eliminate any questions that may be lingering in the back of your mind when you read my words. Stage I, II, and III breast cancers are curable, although there are many different aspects of these stages that impact prognosis and likelihood of recurrence. Stage IV is incurable, there is nothing the doctor’s can do except treat the disease in the hope of prolonging life for as long as possible. They like to use the phrases “incurable but treatable” and “chronic disease”. As the patient I can tell you that hearing those words is like being stabbed and then having the knife twisted around and around, because what they’re saying is, “you’re going to die from this someday”.
Oncologists have a difficult job. I try to remember this in order to maintain some level of empathy for them when they bring up the more formidable topics about this disease. It must be so hard to deliver this type of news to anyone, let alone a 34 year old mother of a 19 month old child. I only vaguely remember the first days after my diagnosis, and many of the words delivered to me then have been forgotten. They could not give me a prognosis so they said things like
“It depends on how your body responds to chemotherapy.”
and my personal favorite,
“Many women live a long time.”
What’s a long time? Well, according to my oncologist maybe four or five years, and sometimes even as long as ten. And what I really heard was, four years when Owen will take his first bus ride to kindergarten…ten years when he will start middle school and begin those blundering years of adolescence. And my husband — in four years we should be celebrating 10 years of marriage. Ten years from now we should be lamenting about living with a teenager soon, or panicking about having enough money to pay for our son’s college. “Is there no hope?”, I remember asking. My oncologist looked me in the eyes and replied, “Oh yes, there is always hope.” She started talking again about chemotherapy, clinical trials, platinum based drugs and PARP inhibitors, and the most elusive of all things, a cure — all of these words flew right by my head and the only thing I heard this time was hope. Hope — the thing that sustains me now, that gets me out of bed in the mornings and reminds me to brush and floss every day. The biggest little word in my vocabulary.
I’ll leave you today with a few words about hope from my favorite poet, but before I do I want to say thank you. Thank you for your lovely comments and your Facebook likes, and thank you for your quiet support. I can’t believe in just a few days there are so many of you joining me as I wade through this quagmire. Thank you for the company.
“Hope” is the thing with feathers
by Emily Dickinson
“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all-
And sweetest – in the Gale – is heard –
And sore must be the storm –
That could abash the little Bird
That kept so many warm –
I’ve heard it in the chillest land –
And on the strangest Sea –
Yet, never, in Extremity –
It asked a crumb – of me.