Some days, you just gotta get away….
I stormed in the door hot and dripping with sweat from my slower-than-normal- 3 mile run with my unruly dog, and my unrulier thoughts, and announced in an icy tone to my mother that I was in a terrible mood. She asked what she could do, and I shot back hastily, my voice fraught with teenage angst, “Nothing, I need my water and I’m going to sit outside.” I unleashed the dog, grabbed my bottle off the counter and the door slammed behind me (was that the wind, or did I just slam it?). I made my way to the back of the house and sat on an area of flatness I found amidst the slopes and slumps of my backyard. The sky was forboding; a dark and heavy shade of grey tinged with dark blue, and the air had a sudden sharp coolness suggesting rain was in my immediate future. I didn’t care. The cloud straight above me was the darkest cloud in my view. How appropriate, I thought to myself. I looked to either side of me; the right had lighter shades of gray, like someone took whipped-cream, dyed it a light grey/blue with food coloring, and smeared it across that part of sky. I looked to my left and saw a similar picture, though the left looked slightly more defined and less hazy than the right side. I took a deep breath and decided to focus my attention to my breath, and to the clouds. As I breathed and took in the picture to my left, I was surprised to find several patches of cerulean blue amidst the light grey whipped-cream clouds (were these patches there all along?).
It began to rain. Pour, actually. I was chilled, but a smile made its way to my lips. I stayed present for a few more breaths before getting up from my place in the grass, thanking the sky for its mercy, and making my way back inside.
I have thought about blogging nearly a hundred times since my last post, and for one reason or another, it just wouldn’t actually happen. Until now.
Truthfully, I felt intensely overwhelmed by the idea of updating this thing because so much has happened in a relatively short period of time-the question of where do I start?? would send me reeling so much that start, I would not…
Since my last post, I have gone from not-adjusted to this life as a person with metastatic cancer, to fairly well-adjusted (with some intense moods in between-I mean, I’m still me).
What’s been instrumental in facilitating this shift, you ask? (Maybe you’re not asking, maybe you don’t care at all!). So far, it’s been:
My mom is incredible. As sturdy and dependable as the ground beneath us, as giving as Shell Silverstein’s tree. We might not always like each other, but I hope she knows how strong my love for her is. I’m lucky to have such a ferocious advocate as my mom and friend.
My dad always can divert my attention with a lengthy scrabble game or a good pun. He is resourceful and inquisitive and loving.
My aunts, uncles, and cousins have supported me in different ways through out this experience, whether it’s sharing meals, crafting, going for walks, having meaningful conversation… each relative has shown me they care in their own special way and I am thankful for each of them.
(I believe in the beginning of my experience with cancer, I projected a lot of anger onto those around me who truly weren’t responsible for it. That’s the hard part about a cancer diagnosis: there’s no real place to put the anger… no person, no external source, no one to blame… )
The nurses at Pluta cancer center are earth-angels. Boundless compassion and wisdom unmatched. I don’t have enough words so that’s all I’m saying.
Old faithful friends. Friends that have stuck around and accepted me where I’m at, regardless of how much they’d probably like to slap me when I’m in those particularly crappy locations. I do not have a million friends. But the ones who have shown me their character and their love for me by sticking around (some didn’t, ✌🏻️out, dollfaces) are as precious as the stars ✨
New friends. I have met some RIDICULOUS people in the last year. Good ridiculous. The best kind of ridiculous. I am so thankful.
My dog. Riley is my most adored being on earth. Sorry, turtle doves. It’s just fact. She’s always there for a cuddle or a run.
2. Integration of mental health and spirituality
I believe I am getting well in all regards, and I think this has to do with incorporating spirituality into my mental health recovery, as opposed to my compartmentalized approaches of the past. I am integrating what I am learning and experiencing with acupuncture, reiki, meditation, reciting the rosary (and other prayers) and other spiritual teachings and practices with concepts like mindfulness, radical acceptance, and other skills from CBT and DBT, and suddenly, the world makes more sense to me. The two worlds of mental health and spirituality seem inextricably linked to me now. Almost like how the hell did I never see this before?
By addressing my mental health, I am also addressing my spirituality, and vice-versa. I am doing a lot of painting lately as a mindfulness practice which makes me feel connected to source and altogether more centered.
I want to share my latest thoughts on all of this but it’s 10:20 pm and I’m pooped so I’ll save it for another time…
3. Being off chemotherapy.
Pretty self explanitory.. chemo is a soul-suck. And a body-suck. It just suck-sucks.
I have so much more to say, but this was as good a start as any. ✨💕🌞
The end of March and the beginning of April 2017 mark several anniversaries for my family and I-all of which are laden with sadness. I truthfully am still trying to wrap my head around everything this last year has been. March 30th was my grandmothers death, and little did I know, that the dawning of April would be the dawning of a very long and painful year. I’ve been contemplative and a little withdrawn lately because I’m trying to take this all in. The cancer-thing. The stage-4-cancer-thing. The loss-of-self-thing. The gaining-of-a-million-pounds-thing. You know, light stuff. (The last one kinda is light, but my newfound heavyness is weighing on my heart). (I’m cracking myself up). (I’m high).
I don’t know where I’d be without pot. I really can’t say it enough. It helps me to not take myself so seriously. It also helps me eat popcorn by the mixing-bowl-full. And I enjoy not taking myself seriously and I also enjoy eating popcorn by the mixing-bowl-full. So the way I see it, it’s is a win-win.
More importantly, it also helps me observe my thoughts. When I’m uninhibited by pots wonderfully delicious vapor (I have a vape pen), I’m able to get off my wheel of thinking; I can establish greater distance between myself and the wheel of thoughts and constant chatter in my mind. I think I remember reading in one of Pema Chodron’s books that Buddhists sometimes refer to the minds constant chatter as “monkey mind”, and I remember picturing a bunch of red “Barrel of Monkeys” monkeys “ooo!-ooo!-ooo!“-ing and “ah!-ah!-ah!”-ing through the vines of my neurons…. it really was an effective phrase with an ever more effective image for me, but anyway…. I’ve gotten much better at observing my thoughts, actually. I can recognize things a lot quicker than I remember being able to in the past. And in that recognition, I can choose whether or not I want to indulge in the thought.
Except around death. When I have thoughts about mortality (mine, loved ones’), they are typically all consuming. There is no separation between myself and the thought. I was thinking about this earlier (while stoned): My struggle in redirecting away from these types of thoughts once the first thought occurs shows me how fearful I am of death.
I acknowledge that I am actually scared shitless.
I have never accepted death in the ways it’s presented itself in my life-that’s become really clear to me as I’ve been navigating this new life. I have all of these intense (and unresolved) fears around my own death and I wonder if my aunt Carol and my grandma and Janet and people who have gone before me felt these fears too, at one point or another. I wonder if these fears are a natural part of aging and if cancer has just taken me from 27 to 77 in a matter of months (physically, mentally, emotionally). I wonder how much of my experience is universal among those of us with illness and how much of it is unique to me. Just things I find myself pondering…
This entry may seem somewhat of a downer, especially considering that I just received pretty great results from my scans-bone scan was clean, abdomen and pelvic ct both clean, (drumroll please) chest ct greatly improved (no more lymph nodes, just spots of a couple millimeters or smaller left here, folks)- but I also have noticed that my mind does not trust happiness, or calmness, or peacefulness, probably due to the conditioning I’ve had in the last year of repeated crisis and trauma. When I experience a victory, I armor myself with negative thoughts because it functions as protection from disappointment and further hurt. The higher you climb, the farther (further? I don’t know, chemo destroyed my brain) you fall, or something like that. Except that in this scenario, I’m missing out on moments of inner peace that I could be experiencing, so in that way, I’m letting the cancer run the show. To which I say: fuck that.
So tonight I’m getting good and high and laughing my ass off (possibly at myself and my own mental Tom-foolery, because I seem to consistently believe I’m hilarious when I’m high). Because I’m alive and all things considered, I’m doin pretty well. I’ve got a little less energy (and hair) than I’d like to have, but I otherwise feel generally well.
My goal is to have more moments of peace and calm every day. My goal is to sit with the discomfort I have around death a little longer every day. My goal is to make peace with death: not my death or anyone else’s, just the concept itself. Sit with the concept of permenance. Of what it means to be alive. Of what it means to be human. Of what it means to live.
I hope ya’ll are tokin’ up with me….🌿
Dear Lung Spots,
First, I must start off by expressing my hatred for you and the countless ways you’ve impacted my life. You are dreaded, you are awful, you are terrifying, you are insidious. You came upon me completely unexpectedly. Just as I was beginning to feel like I could handle this “whole cancer thing” and everything that the last 7 months had brought me (death of my grandmother on March 30th, diagnosis of cancer just 10 days later, bilateral mastectomy, tissue expander “fills”, beginning hormone therapy, implant placement and tissue expander exchange surgery, beginning Lupron, ending up in the psych unit…) I was toppled by your disgusting presence. I was completely blindsided. I had been running 5 miles a day all the way up to your re-diagnosis in November, totally unaware of your presence until the diagnostic ct scan, after my mastectomy scar presented a mysterious rash; I felt nothing in the way of respiration. In fact, I felt nothing in the way of anything- physically, I felt the healthiest I had ever felt in my entire life. Today, on March 14th, everything is different because of you. Let’s start with the basics. Because of you, I had to begin aggressive and terrible chemotherapy right away; there was not time to harvest my eggs (nor would the process have been safe for me, since you are estrogen receptor positive, and the process requires shots of estrogen to plump up the eggs). Because of you, child-bearing is no longer possible for me. Because of you, at age 27, I get to experience the glories of menopause-the hot flashes that wake me up in the middle of the night multiple times each night, the mood swings (on top of what I was already working with mood-wise). Because of you, I am in fear for my life, at the mercy of doctors and specialists and researchers and insurance companies. Because of you, I must contemplate my mortality. Because of you, I have no hair, my nails are ridged and bumpy, my energy is a quarter of what it was. My voice, the thing that has always been a part of my identity, is something I do not recognize, thanks to the last 4 months of poisoning, and the consequent lack of estrogen. My clear and focused bell-like top register is non existent- I try to sing and I cough; my voice is weathered and tired. I had to tell the graduate program that I was accepted into that I will not be able to attend at this time. Because of you.
You are a fuck face son of a bitch and I want nothing more than to see you die and squeal in agony. Not only are you a sneaky, disgusting, rotten and vile piece of shit, you are also not understood by oncologists; otherwise, you would be curable, and I wouldn’t have the frequent panic attacks about dying before my parents, before my dog, before ever having a truly healthy loving relationship. I hate you.
And yet, this feels somewhat wrong to me. You are part of me. My own cells. You are not an invader. I cannot simply fractionate myself from you because as far as DNA goes, we are the same. I want to know what happened to you; what your story is. I want to know the beginning of you, when your first rogue cell replicated, what triggered it, and how. I would like to tell you to calm the hell down; that your anxious dividing is tearing me apart both physically (though I don’t have symptoms directly from you, but rather, the treatment you require) and psychologically. What do you need to be calm and quiet, so that I can live a long, healthy, meaningful life, you gigantic baby?
I will say this: if it hadn’t been for you, I would not have connected with young women like Mackenzie, Lauren, Jen, and other incredible women dealing with their own versions of you. I would not have met the wonderful nurses who took care of me through my chemo treatments-some of whom took care of my grandmother when she was going through her treatment for advanced small cell lung cancer. I would not be invested in the process of learning that I might be a worthwhile person. And sometimes, I do believe that the opportunity to ponder ones death is something we should all do, with or without your presence. If it hadn’t been for you, I would have continued to float on the surface in shallow friendships that did not honor the truth about who I really am. You definitely helped me to weed out the people who were absolutely incapable and clueless in how to be a real friend to someone in tough times. The ones who have remained and the new ones who have appeared are the best people in the whole world and I am so lucky to have them.
It’s this confusing dynamic of both hatred and appreciation that I have for you, and I will continue to try to hold a space for both of those things.
You are very much an unwelcome guest, and I wish you would leave quickly and painlessly.
I am trying to navigate my new life and pick up the pieces of myself that have completely shattered from the last year. I am not the same person that I was a year ago, in any way. Because of you, I have to rebuild myself. Or, because of you, I have the opportunity to rebuild myself. I’m not sure which one is more true, maybe they are equally true.
You are getting your picture taken on March 29th, and it is my most sincere hope and prayer that you are nowhere to be found. I will continue to picture a radiant and healthy emptiness in my lungs in my meditations. No matter what the images reveal, I will continue to make myself healthy and well in all respects. You are a part of my story right now, but you’re not all of it. Don’t get cocky.
I hope this letter is returned to sender. But in the event that it isn’t, know that I am working to starve you by strengthening my whole self.
I thought I’d be happy.
I thought I’d be ecstatic.
I thought I’d be filled with joie de vivre.
March 9th marked the end of my chemotherapy and simultaneously, the beginning of my acknowledgment that for the rest of my life, I will be a metastatic breast cancer patient. The last 4 months have been completely treatment centered; my life has revolved around appointments related to treatment- port draws, oncology appointments, the chemo itself, palliative care appointments (to help manage side effects from the poison being pumped into me, through which I get my pot), and things like acupuncture to help me feel more human… in other words, I’ve been quite busy with appointments pertaining directly to my treatment, and now that a chapter of my treatment has come to an end, what I’m left with is a boatload of time. Time to relive the trauma of the past year beginning with my grandmas death, my diagnosis just 10 days later, to the scans and rediagnosis of stage 4 disease in early November, and the terror I felt all through chemotherapy. Time to ponder the implications of this disease on my future. My life as a “normal” person is over completely. And I’m grieving that. I’m grieving the fact that I may not grow old-the longest a person with metastatic breast cancer has lived is 20 years, the majority live 3-5 years. I’m grieving the fact that I have no desire to sing anymore (because when I do sing, I don’t sound like me, I sound terrible, probably due to the early menopause brought about by chemotherapy). While friends are establishing and nurturing loving relationships with partners, I’m bald and feeling hideous, and also feeling fairly confident that “I have stage 4 cancer” is not something that typically sparks up a mood of romance (not that I’m looking right now. But the idea of having a loving relationship with someone is something I think most people desire). When you’re on chemo, it’s your whole world. And now that I’m done with it, I feel like I’ve been dropped off on the edge of a cliff. I should be happy, right? The physical suffering of chemo is done. But the psychological suffering is setting in, in a way that it couldn’t during chemo because I was too busy, honestly. Like I said, part of the problem is the excess time ( I would try to engage in things I enjoy outside of my house, except that it’s basically a white out here in upstate New York). It’s not like I have a job to go back to; I quit my serving job a year ago to begin traveling for grad school auditions. I was supposed to start grad school for voice in a different state, and then I got diagnosed… and I’m not sure I’m even ready to work. (The thought of bar tending and serving to make some much needed money literally makes me want to throw up). I feel like I need to start this new treatment chapter and get a good scan or 2 under my belt, as well as address my mental and emotional health before I can think seriously about what I’d like to do with my life.
Cancer fucking sucks. If you didn’t read my last blog post, please at least sign the petition I pasted into the end of it. It would help me and every other person diagnosed with metastatic breast cancer tremendously. As of right now, we do not know how many women (and men) are living with metastatic breast cancer, which is a problem because that type of information often drives funding for research and treatment development. This is the type of breast cancer that kills. 30% of all people diagnosed with early stage breast cancer will go on to develop metastatic disease, which actually says a lot about the inefficacy of first-line treatment. Until there is a cure for metastatic disease, breast cancer has no cure.
This is an article explaining why this information is important.
Yesterday, I had my final infusion of taxol, marking the end of my chemotherapy. Thank you to everyone who has supported me through this process, both near and far.
I wrote a poem for the bell-ringing ceremony at the end of chemo, because the poem on the original plaque did not feel relevant to me as a metastatic breast cancer patient. Metastatic breast cancer patients will be in some form of treatment for life. I wrote something because I wanted people who will never fully be done with treatment to have something to commemorate the completion of an aspect of treatment.
Please sign this petition for the CDC to begin counting all people living with metastatic breast cancer. We don’t know how many women and men are living with metastatic disease and this information is vital (in more ways than one). We need this information for funding of research and treatment. Right now, women and men aren’t counted until they die, so we don’t have an accurate picture of the extent of the disease. We need to know how many people are living with metastatic breast cancer to help create better treatment options to keep us alive longer.