Stella Blue

My life with metastatic breast cancer.


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Happy Birthday

Today is my 35th birthday. It probably goes without saying that birthdays mean something very different to me now. I am so thankful to be sitting here today, so incredibly happy to be able to celebrate this day with my family — especially my father, because today is his birthday also. Instead of talking about myself and how grateful I am, I’m going to take this opportunity to write about my Dad. My father was just 23 years old on September 26, 1978, the day I came into this world. I always tease him and say that I don’t need to buy him birthday gifts because I gave him the best gift he could ever ask for when I was born. Dad served four years as a Seabee in the U.S. Navy and left the service to raise me. My mother was pretty young when she gave birth to me and not quite ready for the responsibility of motherhood, so my father stepped up to the challenge and began his new career as a single father. He had help from friends and family so he wasn’t truly alone, but even with help being a single parent isn’t easy. I can’t thank him enough for the sacrifices he made as a young man — sacrifices that most men probably wouldn’t make now, let alone back then. Dad worked swing shifts at the local VA hospital in order to provide for me and it was many years before he met a woman as amazing as him that would lead to the wonderful family that I have now (we’ll save that story for another time). It wasn’t all sunshine and roses — I obviously become a teenager at some point — but we all survived. Dad was always there for me, sometimes whether I wanted him to be or not, and now he is here for me in a way that neither of us ever imagined. Since my diagnosis my father has made the long drive up here too many times to count. He’s driven in Boston to take me to doctor’s appointments and changed poopy diapers, both things that he detests. He’s cooked and cleaned and run countless errands. He’s held me while I cried. Dad, today you are 58 and I am 35. I want to thank you for all you’ve done for me, and for all you will do for me. We don’t have an easy road ahead of us, but I know you will be there by my side the entire way. So today I wish you the happiest of birthdays. You are an amazing father and I love you so very much.

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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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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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Catching up

A quick note today to let y’all know that I’m here, despite my lack of transmission. I’ll admit I’ve had a rough couple of weeks, which is why I haven’t felt like communicating. Getting good news from the CT scan was wonderful, but I can’t help wondering how long it will last. Cancer is smart and sneaky. Usually the drugs only work for a short period of time before things start moving forward again, so I feel a bit like I’m tiptoeing through a minefield. At any rate, I’m starting to recover from my most recent chemo session and looking forward to a little break — five weeks to be exact. I have officially been cleared by my oncologist and the lab running the clinical trial to go on vacation, a trip I’ve had planned for a year. I will be heading to Europe for two weeks with three of my favorite people…my sister, my step-mom, and my best friend of 18 years. This is a major win for me on many levels and I’m finally allowing myself to be excited about it. I have one more hurdle to cross before I go — I have to pass a lab test next week for blood counts and liver function, but so far on this chemo I have had pretty good numbers so I’m hoping that will continue. I’ve never left my son for more than two nights, so that is going to be terribly hard for me. Thank goodness for technology, I’ll be able to FaceTime with him regularly.

So that’s an update from me for now, but I’m going to leave you with a short poem and a reminder for myself and all of you — enjoy the beauty of today and worry not about tomorrow for it doesn’t yet exist.

Living
by Denise Levertov

The fire in leaf and grass
so green it seems
each summer the last summer.

The wind blowing, the leaves
shivering in the sun,
each day the last day.

A red salamander
so cold and so
easy to catch, dreamily

moves his delicate feet
and long tail. I hold
my hand open for him to go.

Each minute the last minute.


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Let’s celebrate!

While I do not intend to use this blog as a bulletin board for updates on my treatments or my health condition, I feel compelled to share some news with you this evening. I know my recent posts have been rather heavy so this should help lighten the load. This morning I had the first CT scan of the clinical trial that I am participating in at Dana Farber Cancer Institute. I was scheduled to receive the results at my upcoming appointment next week but my oncologist called me this afternoon and the news is good. My current treatment plan is having some success and all tumors have shrunk slightly in the nine weeks since I began. It is not a dramatic reduction in size but I am happy with anything moving in that direction, so HOORAY! Please have a glass of wine or crack a cold one for me this weekend as I am still not cleared to enjoy one myself. As a dear friend suggested, I will be hanging with Ben & Jerry for my own celebration.

Cheers!

P.S. A big shout out and virtual hugs of thanks to my lovelies Kate and Rachel for making this week extra special. Us cancer-folk call the stress caused before, during, and after a scan “scanxiety”, the thoughtfulness of your gifts helped me through it. Love you girls!

P.P.S. For those of you who have been with me from the beginning….FOR REAL THIS TIME!!!!!!!!!!


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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.