A letter to my metastatic breast cancer

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. 

Sincerely,

Amy 

Picking up the pieces

I thought I’d be happy. 

I thought I’d be ecstatic. 

I thought I’d be filled with joie de vivre.

I’m not. 

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. 



I am devastated. Nothing about my life is the same as it was pre cancer and I feel terrible. It’s just been loss after loss after loss. I feel ready to throw in the towel on everything right now.  

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. 

http://m.huffpost.com/us/entry/12311030

It’s done!

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. 

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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. 

https://www.change.org/p/seer-start-counting-all-people-living-with-metastatic-breast-cancer?source_location=minibar

Holy cow national news and stuff

I haven’t written in a while because things have been so busy-not just with usual appointments, though that’s certainly part of it. The chemo fog is beginning to lift and I can see the light at the end of the tunnel, and as a result, I’m out living my life (with usual bouts of depression in between). The weather has also been a bit nicer (except for today, wtf!!!) so I’ve been outdoors running and walking and trying to get my vitamin d (although on my last lab, my vitamin d level was 98!). My last treatment is March 9th-less than a week away! I’m very excited to be done with this. I’ve got about 4 lashes left on each eye. But thankfully I had 6 for my national television debut….

http://www.nbcnews.com/http://www.nbcnews.com/nightly-news/video/exercise-is-best-cure-for-chemo-fatigue-new-analysis-suggests-888941123688nightly-news/video/exercise-is-best-cure-for-chemo-fatigue-new-analysis-suggests-888941123688

I was not involved in the study, but was recommended by the social worker at Pluta who knew I was exercising all through chemo. There were definitely days where getting out of bed was a struggle, and though I said that in the interview, they didn’t quite include all of what I said about it (though they did keep the part where I talked about the body feeling heavy and weak). I saw some comments on the story on NBC nightly news Facebook page that were pretty angry and negative. Some people (including some cancer patients, both past and present) were saying it was unrealistic and unhealthy to tell suffering cancer patients on chemo to run. People seemed offended by the story in general.  The study/NBC was not trying to imply that cancer patient needs to be out running marathons or doing anything strenuous. Any activity counts in terms of helping with the chronic fatigue syndrome cancer patients on chemo/ in treatment experience. The message is just “Do what you can”. I think it would have been helpful if it had been stated that I was a very active person prior to starting chemo which is why I am still able to run. But let me also make this clear: my speed has diminished completely. An 8 minute mile pace has gone to a 12 minute mile pace. And instead of doing 5 miles, I can do about 2 on a good day. And there were definitely days where I did nothing. Chemo has affected my physical fitness level. Many of the comments on the Facebook page seemed really angry, particularly about the running part, to which I have to say: running is not necessary in order to combat the fatigue (like I said). But also,  I’m 27 years old, of course I’m going to be in relatively good shape compared to many (certainly not all) older cancer patients…  Many of the angry comments were coming from “chemo veterans” so to speak, to whom I want to say, this wasn’t made to shame anyone for their ability or inability to jog. Every person is different, every body is different, the biology of everyone’s cancer is different. Maybe the chemo agents you were on were harsher, or maybe the anti-emetic drugs that I’ve been on through this whole process (which I’ve heard are drastically better and more effective than what people were taking even 5 years ago) were not available when you were going through chemo. To reiterate, everybody is different. I really did not mean to offend anyone going through cancer treatment with my jogging. And to reinforce, the study simply showed any physical activity is beneficial. I feel badly that some people were so angered by the story :/. 

Nbc news also posted a separate article on the web page. Here’s the article:

http://www.nbcnews.com/health/cancer/exercise-best-cure-fatigue-caused-cancer-study-n728241

I was also interviewed this morning by Beth Adams from wxxi : http://wxxinews.org/post/best-treatment-cancer-fatigue-exercise

So all in all, I’ve been very busy….
I need sleep more than anything right now. Goodnight moon. 

Surprise: you’re allergic! And other new things

Apparently I like to keep things exciting and interesting. I mentioned after my first taxol treatment that I did not have an allergic reaction during the infusion (though that night, I told my mom my throat felt itchy, so I took a Benadryl). Treatment number 2 was this past Thursday, and the infusion itself went fine. But Friday afternoon while driving myself to an appointment, I noticed that I wanted to claw my face off due to the sudden onset of intense itchiness. I looked quickly in the rear view mirror. My face was bright red, puffy, and hot, with little spots all over it. I looked down at my neck, which was also starting to itch. That, too was bright red. I immediately took Benadryl.. 1 adult and 1 child… because I still neeeded to be able to drive myself home (thank goodness I had a glove compartment stash of drugs). I called Pluta and told them, and they said they wanted to see me. So I went from one appointment directly to another, which is unfortunately a normal occurrence in my world right now. My nurse practitioner told me it was a delayed reaction to the taxol, which is extremely rare (go figure), and that I’ll need to be seen by the immunologist for further testing (yay!). They prescribed a tapered dose pack of prednisone, and I will have to take it for the 6 days following chemo for the remaining two treatments. So I have to take pills for a week after each treatment. Doesn’t sound like a big deal, right? Except that on steroids, I am ravenous, wirey, anxious, bitchy, and unable to sleep (and the insomnia just gives the anxiety and bitchines more fuel). 

Not to mention the bloating and weight gain. Enough is enough. I am trying so hard to be compassionate and gentle toward myself at this time of healing but Jesus. It seems as though I’m failing because I’m constantly frustrated in my skin, I’m not used to having a stomach, I’m not used to being so wide. I’ve gotten so that I won’t even turn the lights on in the bathroom when I use it, or even when I bathe because I don’t want to catch  myself in the mirror right now. Being unintentionally bald and fat and knowing that you’re just going to get fatter from these drugs you’re being forced to take to prevent an allergic reaction from an already-toxic treatment…. this all just feels like too much sometimes.
I’m making an effort to put nothing but nutrients in my body because I am so uncomfortable in my own skin. For example, I made a “dessert smoothie” with broccoli sprouts, kale, spinach, banana, raspberries, cacao powder, almond milk and flax seeds. It wasn’t bad…. it wasn’t good either. Certainly not dessert. But I can tolerate just about anything if I think it’s going to be good for me. That’s the survivor in me, I suppose. 

What’s frustrating is that there’s another drug in the same class of drugs (taxol belongs to the class of drugs known as taxanes) that does not cause an allergic response in people. It’s called abraxane, and like taxol, it targets the microtubules in the cell division process, but it is packed with a different preservative-one that people are not allergic to. The problem is, you have to have a reaction to taxol that sends you to the brink of death for insurance to cover abraxane. Some hives on my face, chest, and neck aren’t going to cut it. So I have to suffer more than I already am with prolonged steroid use because my body didn’t react “enough”, as in, my respiratory system wasn’t affected. What a world we live in… 

I’ve been feeling a bit better at least generally on an emotional level, thanks in large part to cannabis, and the consequent introspective thinking and feeling I’m able to tap into when I’m high. I’m stoned most of the day on most days. And right now, that’s working for me. It’s making this all more tolerable. Pot helps me see things with a bit more clarity. Even my own mind- it helps me to detach from my thoughts so that I can observe my patterns, the traps I fall into, and the beliefs I seem to hold about myself and this world-some of which require some attention. Thank god for pot and meditation in helping me to recognize this! 

My acupuncturist says that people who are innate healers often have an initiatory illness or some kind of trauma that propels them down the path of spirituality, and therefore, the practice of healing in some capacity. He was suggesting that he believes that I’m a healer of sorts. It is comforting to me to think that my pain might be transformed in a way that could benefit the greater good. This idea is what keeps me honest about all that I’m going through. It’s healing for me to express my truth and I hope someday it might be helpful for other people to read what I’m writing or hear what I have to say. I know that I have felt comforted by the words of Augustan Burroughs, Marya Hornbacher, Pema Chodron, to name just a few, because their words are so incredibly honest, raw, and relateable in their humanity. They make me feel less alone. (And being alone, or feeling alone, I’ve recently discovered, is one of my biggest fears… …. )

These days, I find myself thinking about what it means to be human, which is essentially a question the whole discipline of sociology is devoted to answering. Asking what it means to be human also requires us to consider what it means to be dehumanized. I think about this a lot lately. Cancer treatment definitely feels dehumanizing to me on a number of levels. And pinpointing why/what about it feels dehumanizing is helping me to understand my values as a human, and how I define being a human being. 

On a somewhat unrelated note, sometimes I’m amazed with how little words do to express and connect us to each other. For example, we all know the word “sad”, but we could experience the actual emotion completely differently. My concept of sadness and devastation and trauma and how those things manifest in my physical body is completely different from your concept and physical embodiment of those things, and these differences are informed by both life experiences and DNA. And yet, we all strive to feel connected. I sometimes wonder if true connection and understanding is possible, because language can only do so much. 

I believe that to love is to know, and I think we have gotten so far away from empathizing with our fellow man because we are disconnected from ourselves. Meditation is helping me to confront myself in ways that aren’t always comfortable. But I find that if I can sit with the discomfort for just a second longer, it usually shifts into something else. That’s the thing about pain and suffering: our ideas about pain and suffering and what that pain is inextricably linked or caught up in is often worse than the actual pain itself. Our minds make things more painful, in other words. I’m trying to tame my wild beast of a brain so that I can get through the trauma of constant appointments and chemotherapy and overall cancer-centered life (right now) a bit easier. 

I wish we humans could tap into each other’s pain more readily instead of keeping it at arms length. I’m sure I will talk more about this at some point but my brain is going wild with texts to consult and quotes to share and statistics to recite on this matter, and I’m just a little overwhelmed right now… 

On the subject of anxiety: 

Two nights ago, I got way too high and started having panicked thoughts about death and dying. I was laying in my bed trying to listen to a guided meditation by Jon Kabat-Zinn, whose voice and words are usually soothing to me. Not that night. I was literally shaking. I had to get out of bed. I found it incredibly triggering. Probably because on some level, I equate embracing meditation and all of these more spiritual aspects of living with an acceptance of my death, which my soul seems to be resisting at this time. Its as if I see acceptance of the reality of death in general as a form of “giving up”. I think it would be healthy for me to get to a place of acceptance of the impermanence of life, while simultaneously still investing in living- somehow in my brain, these two concepts seem contradictory, so that’s something for me to deconstruct… 

During my panicked state, my mind was racing, and this haunting image kept reappearing, assaulting me. It was literally being thrown into the center of my mind; just me, thin and pale, laying on my bed in a room covered in darkness. Alone. I would try to think about something else, but the image would just thrust itself into center stage again. Over and over and over. I had no control over it. And the more I tried to think about something else, the more intense and vivid the image became. What you resist, persists, right? 

My panic that evening made me realize that I’m actually more afraid of going insane than I am of dying. Watching my brain do endless, seemingly-crack-inspired backflips was absolutely terrifying. Horrifying, even. I was questioning my very relationship with “reality”. Cancer itself makes me feel groundless, but this experience was like floating in the blackness of the abyss trying unsuccessfully to grab onto something-anything- to make me feel connected to something. Nothing settling about it. The thoughts and images were coming at me like lead bullets, each one penetrating my whole being sharply and violently-my physical body was actually shaking. I had no control over these thoughts and I couldn’t escape them. I tried to write them down to force the gun-shot-firing to slow down, but to no avail. I couldn’t keep up, it was just flashes of horrible images, images of death, images from both my past and my present and my fears around the future, some things that made sense, some things that made no sense, and then I began to wonder if the things that didn’t make sense to me would make sense to everyone else and vice versa. There is something about the isolation associated with insanity that seems unbearable to me. Because I already feel isolated in my current situation. And I’ve always felt a bit isolated and ungrounded with “reality”- I suppose being an “artistic person” inclined to abstract and “colorful” thinking can explain some of that, along with my long list of disorders- take “body dysmorphic disorder”, for example -a disorder that quite literally means you do not see aspects of your physical self the same way others see you-I’ve always felt like I’ve been teetering on the edge of sanity, but never fully crossing over to the “dark side”. And two nights ago I was convinced that I was on the literal edge of sanity, heading toward a nervous breakdown, as if that sort of thing were as simple as a flick of the switch inside the brain, and my pot smoking happened to flick it, sending me reeling right into crazy land. I kept picturing-rather my MIND, not me-kept picturing myself laying in bed surrounded by darkness as my final breaths were escaping my lungs. And I was alone. The fact that I pictured myself dying in complete isolation really deeply upset me. It is clear to me now that there is a lot caught up in how I define “being alone”, and that is something for me to deconstruct as well. I will continue to ask myself, “what  constitutes ‘aloneness'”? What would it take to not be/feel alone when confronting death? My fear seems to be more rooted in a fear of isolation and aloneness (and how I’m defining these concepts) than of the permanence of death. Something for me to examine, for sure. 

If my thoughts seem jumbled in this entry, it’s because they are. I’m processing a lot emotionally which is sucking up most of the energy I would normally have to devote to making any ordinary sense.. 

Wish me luck for my remaining two treatments. Fingers crossed that I don’t go into anaphylaxis… it’s shocking (pun intended) that there’s a larger immediate risk of death from my current cancer treatment than from the actual cancer at this point. This world makes no sense sometimes. Or maybe that’s just my insanity talking..

Need to explain, I guess.

This is an excerpt of a message I received from someone from my past. I’m sharing this because I need people to know how absolutely painful messages like this are to receive. 

“everyday for the last 2.5 weeks since I found out, I wake up and hope to hear from you becuz i know there will be a day that i don’t…that i can’t, and it truly makes me feel awful. I feel awful for you, i feel awful for your mom, your dog…anyone that’s ever been able to be around you and have a conversation”

My general response to statements of this nature:

I feel uncomfortable with people speaking like they’ve accepted my death already while I’m still here. If you were the one with cancer would it be comforting for you to hear that people are accepting your death while you’re still here, or would it be upsetting? Nobody knows what’s going to happen to them. People die unexpectedly and defy the odds every single day. I’m not a ticking time bomb, and I don’t want to be treated as such. I don’t like people talking like I’m a ghost. I don’t want to hear things like this, it does nothing for my spirit. It implies that people have very little faith in me/my situation. And since my level of hope waivers on a moment to moment basis, I don’t need other people’s fears being projected onto me, I’ve got plenty of my own that require my daily attention (and Ativan). Just try to imagine what it would feel like in my position to hear people talking about your death like it’s inevitable in the near future. It’s hurtful. We all die. People can accept my death when it happens, not a moment before. You can’t prepare for loss. And I’m still here, living and breathing and thinking and feeling. Like my friend Holly has so eloquently stated, this is about how I forge ahead NOW, not how others forge ahead LATER. 

Please, everyone, just consider how what you’re saying might be received by the person who is “sick”. I’m living with breast cancer. I’m not dying of it. Not now. 

Musings on the thief

Today I don’t feel much

like a woman. 
Hot flash after nauseating hot flash 

reminds me of my altered state; 

at twenty-seven,

the potential for life to grow

inside of me

has just been ripped from my hands.

I will never bleed again, in that way. 

Maybe

it was never meant to be. 

My breasts, carved out of my flesh,

torn away from my skin. 

Forever. 

Tirelessly buoyant silicone sacs adorned 

with cherry pink scars 

remain in their place. 

Laying on my “chest” now

feels foreign and wrong. 

I am uncomfortable in my own skin

in a whole new way 

today.

I wonder sometimes how my silent killer 

looked 

as it was being carved out 

of me.

I wonder what sounds filled the room as

the knife dug 

around it.

I wonder if it came out of me willingly, or 

if it put up a fight. 

(I assume it did not want to leave, 

considering it’s made itself a nest

in the upper lobes of my lungs). 

Stage 4 cancer is a gift that keeps on 

giving. 

Goodbye to breasts, to hair, to childbirth, 

goodbye to friends and family 

(no one knows what to say, and you’re 

suddenly the ever-stigmatized “dying 

girl”), 

and someday, goodbye to life. 

All at the hands of some tiny 

misbehaving cell. 

When my doctor examines me in my  

weekly appointments, her fingers 

dancing

along my scars, 

Feel

Nothing.

Today I will try to be grateful 

for numbness-

pain seems an unpleasant alternative.