Stella Blue

My life with metastatic breast cancer.


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The sounds of summer

I lie with my head nestled into his shoulder listening to the symphony of thunder, cicadas, and rain falling outside our bedroom window. The sounds of summer, amplified in the close darkness of night. My thoughts drift to another time, a time before the sweet one sleeping peacefully across the hall, before the furry one curled up at our toes. A time when a home, a new car, and a career seemed so distant — haphazard dreams in the chaos of youth. We had friends, disposable income, the incomprehensible vastness of a life yet to unfold. We were not burdened by experience. Our life was full, and it was all so grand.

I turn my face into his arm to smother the tears before he can notice. I press my cheek into his dampened t-shirt and think about the richness he has brought to my life. The moment stretches suddenly before me and we are the same as before, the same as always — a shared space, his arm hooked around my shoulders. We are no longer carefree, we are no longer young. We have added a thickness to our middles and a weariness to our eyes. We hug with a worn, familiar ease but we are not tired. We are Atlas now, together, our knees struggling to support the weight — for our friends, our family, our child — for each other.

I close my eyes and it could be the first summer, or two, five, ten summers past. The sounds are the same, always a melancholy tune to sing you sweetly to sleep and a promise of raucous birds to wake you, celebrating the dawn. I close my eyes and the vision of time passed becomes blurred. It is childish, but I want this moment to last forever. I want the comforting weight of his arm to remain, to remind me that our life is full — that it really is so grand.


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Time

Sometimes the words come easily, other times they get stuck — like a clogged drain in your tub or a popcorn kernel in the back of your throat. It’s irritating. It’s not quite writer’s block, it’s more like there’s too much to say. Too much to say and not enough time to say it. I want to write every day but like everything else in life it’s challenging to find the time. There are errands to run, a household to manage, and people to love. So much living to do. Every minute, every second is precious and choosing how to spend that time can be stressful. I sit watching television with my husband and I think, why am I wasting this time watching TV? I know that it’s something we’re doing together, and we quip back and forth throughout the show so we are at least communicating and sharing the experience, right? Is that a justification or an excuse? Watching TV is a waste of time, sure — but it’s an escape for me and probably for him, too. I don’t think about cancer when I’m watching it, unless it comes up in the show. Sadly this happens quite often and I can feel its presence reappear in the room, a lurking, malicious beast that stalks us everywhere. There is no escape, not really.

I try to squeeze in time to write where I can — when Owen is at daycare, before work, on lunch breaks, and in the evening before bed. I need the quiet to think so I prefer to write in solitude, but I hate to be alone. Having stage IV cancer is lonely enough as it is, and when I’m by myself I feel as though I’m stuck on a rock in the middle of the ocean. When I’m with others I can at least see the shore. Luckily the time that I’m truly alone is very limited and I am so very thankful to have many wonderful people in my life. It’s a complicated thing to feel so blessed and so cursed at the same time. I walk a fine line of feeling incredibly grateful and being crushed by despair. It’s very hard when you know that time is short, harder not knowing exactly how short it is. The list of things you want to accomplish becomes smaller out of necessity, and your goals change, too. Instead of saving money for a vacation or a new home you are saving for funeral expenses. Instead of cleaning out your closet to make room for new clothes you do it so your husband has less to go through when you’re gone. All the little things you thought you would get around to doing haunt you like last night’s dreams. The pictures you wanted to frame, the books you wanted to read, the junk drawers you wanted to sort. Never mind the bigger things, that’s another post entirely. There are a million thoughts you have about time when you can feel it running out. I wish I could capture them all but my mind is so crowded — with words, memories, songs and poems, hopes and dreams…with life — it’s impossible.

While writing this I remembered a poem I learned in high school, taught by one of my favorite teachers*. We were learning about the metaphysical poets of the 17th century and about carpe diem, and one poem sticks out vividly in my mind. It’s quite racy and probably shouldn’t be taught to young, impressionable teenagers if taken at face value — but the message behind it resonates with me so much more now than it did when I was sixteen. I hope when you read it that you can recognize the urgent and desperate desire for love and life, for time. It’s palpable, and it’s what I feel every day.

* If you’re as lucky as I am, your life has brought you a handful of people that are true kindred spirits. There is a connection made upon meeting that is immediate and it does not deteriorate with the passage of time. It is dependable, loyal, ageless — a bond that cannot be broken. I’d like to use this moment in time to thank my high school English teacher, Mr. Thomas Clark — he is one of these people in my life. He is the one who taught me literature and poetry, the value of debate and of speaking your mind, and most importantly, he’s the first one I can credit with teaching me to see beauty in the little things in life. Even though he made me read Beowulf, I still cherish his friendship to this day. Carpe diem indeed, TC. (And I’m only joking about Beowulf — mostly.)

To His Coy Mistress
by Andrew Marvell

Had we but world enough, and time,
This coyness, Lady, were no crime.
We would sit down and think which way
To walk and pass our long love’s day.
Thou by the Indian Ganges’ side
Shouldst rubies find: I by the tide
Of Humber would complain. I would
Love you ten years before the Flood,
And you should, if you please, refuse
Till the conversion of the Jews.
My vegetable love should grow
Vaster than empires, and more slow;
An hundred years should go to praise
Thine eyes and on thy forehead gaze;
Two hundred to adore each breast;
But thirty thousand to the rest;
An age at least to every part,
And the last age should show your heart;
For, Lady, you deserve this state,
Nor would I love at lower rate.

But at my back I always hear
Time’s winged chariot hurrying near;
And yonder all before us lie
Deserts of vast eternity.
Thy beauty shall no more be found,
Nor, in thy marble vault, shall sound
My echoing song: then worms shall try
That long preserved virginity.
And your quaint honour turn to dust,
And into ashes all my lust:
The grave’s a fine and private place,
But non, I think, do there embrace.

Now therefore, while the youthful hue
Sits on thy skin like morning dew,
And while thy willing soul transpires
At every pore with instant fires,
Now let us sport us while we may,
And now, like amorous birds of prey,
Rather at once our time devour
Than languish in this slow-chapt power.
Let us roll all our strength and all
Our sweetness up into one ball,
And tear our pleasures with rough strife
Thorough the iron gates of life:
Thus, though we cannot make our sun
Stand still, yet we will make him run.


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Spring rain and giving thanks

I love this time of year — the temperature just right to leave one window open in the bedroom at night, waking up to a cool breeze, the sound of steady rain and birdsong floating in to gently rouse you from sleep, and a soft, fuzzy blanket to pull around your shoulders as you contemplate getting out of bed. Seeing green leaves out the window is such a welcome change to the dreary gray skies and barren trees of winter.

I’d like to give thanks today to all soldiers — men, women, and let’s not forget the dogs — and their families that gave the ultimate sacrifice to protect our freedom. I’d also like to dedicate this post in honor of a dear friend’s partner in life who sadly passed away unexpectedly last week. He was a Vietnam veteran and an all-around great guy who loved fishing and his family. Rick, you will be missed so very much. My heart is with your family as they try to pick up the pieces and carry on.

I’d like to wish you all a wonderful weekend and remind you to enjoy the little things that life has to offer. Hug your loved ones and tell them how much you love them, life is so unpredictable and often too short.

In memoriam, Richard A. Roy, 1948-2013


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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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