Stella Blue

My life with metastatic breast cancer.

Tag Archives: dying


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Envy

Envy. It’s a sharp, pointy little word, isn’t it? It even looks venomous. Jealous seems rounder, softer. But if you look them up in the dictionary, the definition of jealous has much more barb behind it…

jeal-ous
adjective – feeling resentment against someone because of that person’s rivalry, success, or advantages

en-vy
noun – a feeling of discontent or covetousness with regard to another’s advantages, success, or possessions

If I hadn’t actually looked up the definitions, I would’ve probably written this post using the word jealousy, but envy is more accurate. I don’t know if it’s possible to truly convey all the different thoughts and emotions you have when you’re facing what I am, no matter how good of a writer you are. But I have to tell you that envy is one of them. It’s not a big one, but it’s there. It hovers quietly in the back of my mind, waiting for certain moments in a conversation or snapshots of others living their lives in a way that I never will again. It’s hard for me, and it really stings. I don’t want to feel this way, especially when it comes to friends and family. But it’s my reality, and to deny that it exists isn’t fair to me, or to my readers. I promised myself that I would be totally honest with this blog, and so I have to write this. I hope no one takes offense because I certainly hold nothing against any one of you. The envy is a double-edged sword, because while I may constantly harbor this unwanted guest, I also maintain an acute desire for all of you to have the things that I am covetous of for many, many years to come.

I am confident that anyone in my situation struggles through each day no matter what age they may be, but there are many things that I struggle with at 34 that I think I can safely say the majority of people with stage IV cancer do not have to endure. It’s extremely hard knowing that there will come a day that I will not be able to mother my son — no bedtime stories, morning snuggles, or kisses to make the boo boo’s better. He will probably be too young to understand why, and I worry so much how this will affect him emotionally. When I think about dying I grieve for his loss — how painful and confusing it will be for him, and how difficult it will be for my husband to hear him calling out for me. These things make me envious of my friends. Being Generation X’ers, many of us waited until our early 30’s to marry and have children, choosing to spend our 20’s wrapping up our education and focusing on our careers. The result of that is a Facebook feed that is constantly streaming with newborn photos, second and third pregnancy announcements, pictures of family vacations, chocolate chip cookie smiles, new backpacks for school…I could go on for hours. From the momentous to the trivial, I’m simultaneously overjoyed for my friends and reminded of the things my family will be denied. It’s often hard to talk to them now because in so many ways their lives are just beginning. Spending time with them can be challenging for me as I listen to tales of nights out with other couples, inside jokes and parties missed, plans for home updates, career advancements. It hurts, and then I feel guilty for being envious. It happens with family, too. Conversation tends to be a little more familiar and I think that sometimes allows them to slip into a bit of denial because they are always around. This means that there’s a lot of talk about the future — about Owen growing up, my sister and brother-in-law settling down and having nieces or nephews that I will never get to hold, family reunions. It’s difficult and I try to bury the feelings before they can see it in my eyes.

Now that I’ve been diagnosed with metastases to the brain I am dealing with an entirely new set of emotions, but the envy is still there. Until this diagnosis and treatment I have been relatively well except during chemo. Learning to accept my new situation in combination with whole brain radiation therapy has taken a piece of me that I’m afraid is gone forever. I feel different now, I’m not quite myself. I’m struggling with the littlest things in addition to the big ones — so the envy is different. I’m envious of being able to walk without looking at your feet, of cutting a peach in less than three minutes, talking without concentrating on each word you say, remembering what you said five minutes ago or following a conversation with ease. Things have changed drastically and it’s so very much harder for me than the bleak and raw New Year’s Eve when I found out I was dying. I can’t drive. I can’t think straight. I have a hard time maneuvering through the day. My eyes are out of focus and I don’t talk much. I am at risk of developing dementia within six months. This scares me and makes me worry constantly about what kind of mom I will be to Owen now, what kind of wife, sister, daughter, friend. I am afraid for my career, which introduces an entirely overwhelming set of worries that I don’t want to think about. On top of it all there is the envy — still there, still hovering — except now I’m not envious of others but of who I used to be, and that is devastating.


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Bittersweet

It happens from time to time, I get a glimpse of my “old” life and for a fleeting second forget that I am dying of cancer. These moments are simultaneously wonderful and devastating. I might be out with a friend for lunch, pumping gas into my car, shopping for Owen, or doing dishes at my kitchen sink. It’s always random and for that brief moment I feel free, as though I’m flying and nothing is tethering me down. I feel like I did before, able to live my life without a shadow cast overhead. It doesn’t last very long because reality always comes crashing down, dragging me with it in its vice-like grip. In this moment of clarity — when it all comes rushing back to me — I can’t breathe. I’m ten again and I’ve fallen flat on my back off the trampoline — immobile, breathless, terrified.  This time there is no ground to break my fall, and so I’m left to kick and scream in mid-air with no one to hear me, no one to catch me. Alone and falling, falling so fast — past the memories that were supposed to one day be mine. I reach out to touch them and slide my fingers over their sparkling surface…

The look on Owen’s face when he sees Disney World for the first time.
The birth of our second child, to see again Andrew’s incredible capacity for the patience and self-sacrifice of fatherhood.
Owen’s high school and college graduation ceremonies, his wedding.
Ashlei’s wedding, the birth of her children, becoming an Aunt.
Retirement — relaxing on the dock looking out over the lake with him, my partner in life…reminiscing about the early days and arguing over chores, still.
Grandchildren.

I will not see these momentous occasions, they will occur without my physical presence. I hope that there is more to this life, and that I can be there in some way, spirit or otherwise. I hope that my loved ones will always feel me near as they celebrate those unforgettable moments that life has to offer, but my sorrow at missing out on them is endless. I am so very grateful for the incredible moments I have been blessed to experience and I will hold them close until the end. When my time comes, I will take my last breath knowing that my time here was extraordinary, that during my brief existence I lived and loved as greatly as I could. I know there will be more wonderful memories to make before this happens, but everything for me is tinged with darkness — all of the good moments are bittersweet. Still I fight for them, even though they are broken and imperfect. They may not be the memories I thought they would be, but they will still be special.


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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.