Stella Blue

My life with metastatic breast cancer.


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Origins

I’ve been asked by several people to explain the name of my blog, so here it is for those of you who are curious. Stella Blue is named after one of my favorite songs. Pretty boring, huh? You probably thought there was a better story behind it. Sorry, turns out I’m not that original — but let me tell you about it anyway. It’s a beautiful and haunting song by my favorite band, the Grateful Dead. Some of you may be surprised to find out I’m a Deadhead, others might not even know what that is, but most of you already know they have been my favorite band since I was about eleven. I have to thank my good friend, Amelia Brown-Belabbas, for introducing me to them. Their music has carried me through many challenging times, none so difficult as this of course, but I am comforted by their tunes once more. I’ve posted the song below in case you’d like to listen to it. I’ve also written out the lyrics, which are especially meaningful to me now. So that’s the story behind Stella Blue, I hope you enjoy the song even if the Grateful Dead are not your style.

 

Stella Blue
lyrics by Robert Hunter

All the years combine
They melt into a dream
A broken angel sings
From a guitar

In the end there’s just a song
Comes crying up the night
Through all the broken dreams
And vanished years

Stella blue
Stella blue

When all the cards are down
There’s nothing left to see
There’s just the pavement left
And broken dreams

In the end there’s still that song
Comes crying like the wind
Down every lonely street
That’s ever been

Stella blue
Stella blue

I’ve stayed in every blue-light cheap hotel
Can’t win for trying.
Dust off those rusty strings just one more time
Gonna make them shine

It all rolls into one
And nothing comes for free
There’s nothing you can hold
For very long

And when you hear that song
Come crying like the wind
It seems like all this life
Was just a dream

Stella blue
Stella blue

 


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For Andrew

I know you haven’t summoned the strength to read my blog yet, but I wanted to give you a little something to show how much we have accomplished. I am so lucky to have found you in this crazy world and I want to thank you for the last thirteen years. I hope we have many more years to come and although I cannot promise you that, I can promise that the memories we have made and the life we created together — our beautiful son, Owen, — will always provide comfort to you no matter what the future holds. We have lived an amazing life together and our story isn’t over yet. I know we have a hard road ahead of us but I also know it will be full of wonderful new memories and lots of joy and happiness as long as we are on it together. I love you.


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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.


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Poetry

A good book of poems and a quiet yet brief moment with River was my inspiration for today. Some of you know I love to write poetry, although I am no Emily Dickinson. I have rarely shared my poems with others so please, be kind.

RIVER AT THE LAKE

She smells of earthworms
caught, lured out of their safety
by sweet, damp Spring.

She leans against my side
for warmth, gently.
A comforting, stalwart presence.

Here we could stay
forever, but for life —
and the loons
and fish that leap, oh!

So with a startling harrumph
she leaves me,
because the lake is alive
with possibility.

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It’s simply love.

It has taken me four months to write this post. Four months that seem like an eternity. December 27th, 2012 was the day that my life changed forever — it spun out of control and I lost sight of everything. Well, almost everything. In some ways everything became clearer than it’s ever been before. I’ve lost a lot in four short months — a life without worry and fear, the ability to create dreams for the future, my hair. But what I’ve found is love. I don’t mean that in a cheesy, “all you need is love” kind of way. Or maybe I do, because there is nothing else that is more important now than love.

If you’re like me you have always loved your friends and family, even though at times it may have been challenging. This love is there now in fact, but maybe you take it for granted. I know I did. The love that is present in my life now is so much more powerful. It’s rooted in my gut so deeply that I am often overwhelmed by the feeling of it. It’s demanding and relentless, my desperate and constant companion. Every second I spend with a loved one, whether it is a family member, friend, or even colleague, is weighted down with this feeling of love. I always want more and the sadness of someday losing it sends me reeling, grasping to hold on as long as possible while it pulls away slowly, quietly. It dances at the fringe of my fingertips, flirting with me in the most devastating way.

I feel this way towards everyone in my life, even strangers. This is more compassion than love I suppose, but it’s just as deep. I see things in a way I’ve never seen them before. Nowhere is it more present than at my hospital. I look around the waiting room while I’m there and secretly absorb the love that is all around. The elderly husband pushing his wife in a wheelchair, bending down to catch her magazine as it falls to the ground, her baseball cap hiding a fine wisp of hair. The weary mother of a disabled adult, patiently requesting that he speak with her in the hallway as he yells at her and causes a scene, her hand lovingly pressed to the small of his back. The parents of a little girl, her pale and tired form molded perfectly against her mother’s chest, the father bending slightly to brush his lips against the crown of her bald head. I wonder what we must look like sitting there, me and my husband. I wonder if anyone notices our love in such a way, these little details which are now so obvious to me.

One of the things that has struck me since being diagnosed with stage IV cancer is the need to live for the day. Being a planner by nature, this is very difficult for me and something I struggle with constantly. I try to find something beautiful each day to appreciate and remind myself that tomorrow is never promised, not for anyone. Some days it is very hard to see through the dense fog of my disease and I have to consciously seek out that one thing of beauty. Other days are abundant with opportunities. I’d like to leave something here that will help all of us remember to find this beauty in life, and I plan to do this as close to daily as I can manage. Today I’ll leave you with a picture of the most ferocious love in my life, my son. I hope you all have someone who threatens your heart to burst as much as this guy does mine.

these two teeth

Cheese!