Constellations


(I have the best surgeon in the world. I don’t know that all surgeons converse with their frantic 27 year old patients via text message on Saturday nights)

It’s been an eventful past 2 weeks. Waiting for the results of the biopsy from my mastectomy scar “rash” feels like forever ago. I’m making a lot of shifts mentally and proceeding forward with an army of support and love both behind me and at my side. Also, thank God for marijuana-Seeing a palliative care specialist next week so that I can get some state-sanctioned medicinal grade happiness. That’s what I’m calling it. Because when I’m stoned, I’m able to view this as “an experience”. And right now, attaching myself to any idea of anything being completely or definitively good or bad isn’t safe. And probably isn’t truthful, either. Things aren’t all-or-nothing. 

This week has been a revolving door of hospital and doctors offices. It began on Monday morning with my oncologist, and finished yesterday at RGH post port placement surgery.

Monday’s appointment was interesting.  My oncologist pulled up the images from the chest CT scan onto the computer. For some reason, I was picturing these spots on my lungs to be gigantic and evil looking, perhaps with faces or devil horns and red pitchforks. When I actually saw them on the screen, I was surprised at how small they were, and their constellation-like appearance. They were truly just little specks, a spray of tiny dots, like a misting of stars-How poetic, I’m the girl with stardust in her lungs!  It was almost kind of pretty –you know, in a dangerously lethal kinda way. And the entire time I was looking at the screen, I felt as if I was looking at someone else-not because I found it so overwhelming that I detached from the experience somehow, but because it’s simply strange to see your insides on a computer screen. Not everyone gets to see their own lungs and lymph nodes and skeleton in this way! Lucky me?

The NP told me to eat as much and as often as possible before chemo and during chemo… apparently this particular regimen can make people drop weight because of the side effects like nausea and vomiting. Was also told they give you steroids to counteract that so I might actually gain weight. But I tuned that part out and said well eff that, I’m gunna eat. 

I began eating my weight in all kinds of food starting Monday, continuing to this moment, as I sit on my couch eating dried pineapple. I was 125 a week and a half ago. At my appointment at the same office (same scale) this week, I was 130. 5 lbs in a week and a half…. apparently we don’t have to worry about my appetite right now. 
I have breast cells in my lungs. Cells from my boob made their way to my lungs. Regardless of the cancer part, having boob cells in your lungs definitely indicates that your body is confused. I was thinking about that on Thanksgiving and laughing hysterically to myself. I keep picturing cells in the shape of boobs floating around in my lungs, next to lung-shaped lung cells who are all giving the rack cells dirty looks and gossiping about how unwelcome and overweight the boob cells are behind their backs. 

I had my chemo port put in on Friday, which will hopefully make the next 16 weeks much easier. My veins are impossible, and they typically have to try multiple times before they’re successful even for routine blood draws… so the port should simplify things. The port surgery was relatively short, and I vaguely remember calling the surgeon “mother hen” before I went under… so all in all, it was a good day. 

I keep thinking about how things would have played out if it weren’t for the rash. If I hadn’t noticed the change in my scar, I wouldn’t have known about the cancer in my lungs… at least not until the tumors were so large that they were causing symptoms like pain, wheezing, difficulty breathing, coughing up blood, appetite/weight loss etc. I’m thankful we caught this before that point. There’s really not a lot of cancer present. Yes, this is scary. Metastatic disease is the disease everyone fears, with good reason-breast cancer contained in the breast (in situ) rarely hurts anybody, it’s when it travels through the lymphatic system to different organs that poses a threat to ones survival. I feel relatively lucky (bare with me). I feel lucky that we caught this at a point where I am not at all symptomatic, where there are not large tumors blocking airways, where I have a visual marker on the outside that I can use to gauge if the chemo is working or not (my rash!!-I don’t even have to wait for scans in order to know if my body is responding!!)

I start chemo on Monday. A lovely blend of adriamycin and cytoxan. I’m not looking forward to this at all. Not one bit. But I’m doing it.  I’ll be working out before every chemo session (that’s the plan, anyway) to open up my lungs and get my blood flowing there, so the chemo will more effectively get to where it’s needed. That’s the theory anyway, founded on instinct. 

My fate is not sealed. I’m proving this to myself as much as I am to any one of you. I’ve told my doctors that I don’t want to talk statistics or numbers or prognosis, I just want to live MY existence without any worry about what the numbers might say. And you know, statistics haven’t really ever been entirely accurate with me when you consider that about 1% of all breast cancer cases occur in women under  30….. fuck the numbers, I’m living my life. It’s about damn time I started, too. 
So, this “fight” begins, though I really hate the “battle rhetoric” around cancer. But I guess it seems appropriate given my current situation. Being metastatic means there will be a part of me fighting for the breath in my lungs til the day I die. 

My mom has been by my side always, but in a new way in the last year. From listening to my screaming and crying about cancer, or how much I can’t stand my face/body/mind/self, accompanying me to my spa retreat at the psych unit in October, buying every single supportive supplement and fresh nourishing food, to taking me to every appointment, acting as my scribe so that I’m free to absorb and ask questions, to throwing Kleenex boxes, pens, notebooks, pillows with me upon receiving bad news from the most recent biopsy, to holding me like the little girl I still am on the inside while I crumble in her arms…

Mom, this fight is for you ❤️

11 thoughts on “Constellations

  1. Amy, you are one amazing, strong woman and I’m praying for you always! You inspire me in so many ways!! Much love to you & your mom!! ❤️🙏🏻❤️

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  2. One day, one step, one breath at a time, you will travel this next turn in the road. No one can tell you what these next few months will be like — what difficulty and what blessings you will find along the way. But you will never be alone in this. Even during those times when you need to seek some healing solitude, you will be held in the thoughts and prayers of others who care.

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    1. Thank you so much Pat. I will be visiting the coalition soon, just trying to feel out how this chemotherapy thing will make me feel.. so far, so good… I ran a few miles when I came home from treatment on Tuesday. Today I’m a little fatigued, but nothing terrible… but like I said, I want to come by the coalition soon, I hope to see you 💕

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  3. Hi Amy, I just heard about what has been happening to you – and though I haven’t seen you in years – the minute I heard your name – I remembered you. You are a very memorable person. It’s breaking my heart that you are having to go through this. I must say though – that though your career path is music – I daresay – in all seriousness you could have a second career as a writer. Totally immersed in your story – praying for you and your family. (Misty- Kaylie’s mom)

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    1. Dear Misty, thank you so much for your sweet message. I hope you and your family are doing well-I remember after school play dates with Jordan, Cj, and Kaylie at your home very fondly. The support I’m receiving at this time is completely blowing me away. I’m overcome with gratitude in this moment. Please keep the prayers coming!

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  4. Amy, you are so inspirational. Your crab Shack crew cares so much about you, and I was grateful for that crew for informing me of this news, as I so badly wanted to reach out to you. Thank you for sharing this journey you are going through with us. Your optimism and light-heartedness is truly so admirable. I will NOT stop praying for you, for your health, for your wellbeing, for your beauty and strength to shine through this. You got this girl.

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  5. You’re such a strong woman Amy. I know you have days where you absolutely break down and that’s to be expected. However the days like this, when you can see things in a light that brings you humor, signals your determination to win this battle. I’m so proud of you and look forward to your future posts.

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