Stella Blue

My life with metastatic breast cancer.


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She

I can see her across the shiny, sterile hallway — or at least I can see her feet. My neighbor. The hospital bed juts out from behind the curtain like a peninsula. Her legs are wrapped tightly in white fabric, her toes and the tops of her feet poking out in a forgotten way. Her toenails are not polished, the skin on her legs pale and freckled. The flurry of activity when I arrived prevented me from seeing her fully. The ladies were blocking my path with their noontime cart. Would you like a sandwich, a fruit cup? The other things are there, too, the ones that aren’t offered — ginger ale, applesauce, saltines. The more sinister offerings of lunch time in the chemotherapy ward, on a shelf below the others as if hiding in shame. Her visitors grab a few items, then turn solemnly back to their quiet corner.

Her doctor arrives and brings a colleague. I hear the rolling pitch of questions being asked, gentle murmurs in response. The illusion of privacy here is as subtle as an elephant. I am embarrassed for her and I turn my head and try not to listen. I see her people now. The young man in khaki pants, his nervous, fidgeting hands climbing the upper half of legs, unsure of what to do, where to be. The couple, so orderly in their suits and collars, pumps and pearls — but their eyes betray them, they are lost and grasping at the empty air.  Her husband, her parents…she is young. She is like me. The realization of this hits me and I’m taken by surprise. I let the shock wash over me and steal a glance at my husband, his hands on the iPad but his eyes looking up, at them — at her. He has seen it, too. I say casually, I wonder how old she is? Do you think that’s her son? I know the truth, and still I pretend. No, he says, she is young…those are her parents. 

They come for her then, the doctor and his assistant. One is pushing a wheelchair, the other is lowering his voice once more as he turns to speak to her father, her mother. Suddenly she appears as the curtain slides back, her hair dark and close to her head, her face sharp and angular, framed by sunken cheeks. Her arms are two thin rods, bent now around the neck of the young man as he lifts her from her bed and into the chair. She settles into it with a heaviness that belies her slight figure. My husband is also observing this and I panic briefly at the thought of being caught watching her. Instinctively my eyes are drawn to her mother. She is looking at me. She is seeing me. Her eyes are sad and possess a knowledge no mother should have. Our eyes meet several times as the wheelchair is pushed away and goodbye’s are exchanged. I see myself through her eyes, I am her daughter’s past. They are gone with as much activity as they came and I am once more alone with my husband. The infusion rooms are quiet now, we do not speak and turn back to our separate distractions. There is no need for conversation, we are silent in our shared understanding of what we’ve seen. She is my future.


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To walk a mile

I just want to take a moment to give thanks to five wonderful people who began a sixty mile journey today in my honor. The Boston Susan G. Komen 3-day walk kicked off this morning in the rain and I am so honored by the efforts of my Aunt, Uncle, friends, and especially my amazing sister who put together a team in my name and collectively raised over $14,000 for the fight. I am so blessed to have you all in my life and I wish I could be there to cheer you on as you finish the first leg of your journey. I am with you in spirit and you are in my thoughts – and of course, my heart.

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Chemo

doxorubicin
cyclophosphomide
carboplatin
paclitaxel
oxycodone
alprazolam
lorazepam
ondasetron
prochlorperazine
dexamethasone
aprepitant
palonosetron

I can’t pronounce half of them but I know them very well. I can identify each by their brand name, which I write on their bottles if they accompany me home — this way my husband knows which one to bring me when it’s just too much to move on my own. All of them have made themselves at home in a body that rarely saw Tylenol. The list of poisons grows, the ones that are fighting what my body can’t and the ones that make those tolerable. A list that will never stop growing, always adding a new soldier to its army.

These drugs march their way through my bloodstream, conquering my body for good or bad. I look at pictures of women throughout their own arduous battles and I see the toll it has taken on them over time. How long until I am the frail, wrinkled skeleton I have seen in photographs? How long until my own eyes are haunted with the ghosts of failed hopes?

I am 34, and I am not 34. I don’t remember what it feels like to be young anymore, my heart and spirit are old. My body has also aged. My joints ache with an elderly pain, a nagging reminder that my body is a battleground for a war I did not choose to join. I look in the mirror and do not know the person who is staring back — the flaking, ashen skin and gray, sunken eyes. It isn’t me, surely it can’t be me.


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The D word.

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

Everybody’s different
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.