i awake feeling heavy this morning here in New Mexico. i didn’t sleep well, but i never sleep well. i feel this overwhelming need to write today, to fill in the gaps a bit for my family and friends, so you understand what this journey is about for me. there’s something very uncomfortable about putting all this out there for you to see and read and judge but that’s part of nature, really, however sad and unfair it is at times. i went back through my journal i have kept since ‘it’ happened, the cancer, and pulled some of the most significant entries out. i don’t want to frighten everyone away with my cancer craziness but screw it, i want you to know. Please be advised that profanity is used widely throughout this post.
when asking someone whose opinion i respect about my blog and the direction i should take, they said i should focus on the ‘ange-ness’. this makes total sense. i don’t want to be anyone but myself and everyone that knows and loves me understands that underneath my surface there is darkness and there is light in my soul. I was told to focus on “what perspectives you have that make you uniquely you. Your thought process. This is a huge, horrible, defining event in your life, but it doesn’t define you as a whole. There’s, much, much, more. You on the other hand are in some genuine shit and are part of something. The epidemic among women with breast cancer is staggering. You’re part of something, a greater good and I think you have a strong voice and unique perspective and it deserves to be heard regardless of the audience size.” I appreciate this feedback and it provides the needed encouragement for this post.
an excerpt from journal day 1, the lump. happy new year.
angela marie amoroso
life changes. 2014. age 34. amherst, nh.
1/2/14 – i found a lump. no, it found me. it stabbed me in the arm, it was screaming at me. ”I am here, I am hurting you”. I already knew. I started sweating. i felt it more closely. It was hard. It wasn’t round. It had an edge like a triangular, jagged rock. it didn’t hurt. I called my mom, took a shower and decided to call the doctor the next day which of course I didn’t do because I was too busy or just too lazy.
1/17/14 – it was friday, around noon, and the phone call started with, “Angela, unfortunately, it’s not good news…” said Dr. C, the sweetest, meanest woman id ever met. I knew this was coming. I never even began to imagine what it would feel like to hear it. But I already knew it. I laughed and cried and hyperventilated in my office at work, for what seemed like an eternity, called my mother and left work in a fog because I wasn’t surprised but yet i never expected it. my mother and i go meet with the surgeon. she believes that it’s a ‘well behaved’ cancer based on the findings thus far. oh you mean the findings of the biopsy that i had on tuesday, when the radiologist thought it was ok to say, “you’re totally fine, I’ve done a thousand of these, it’s 100% benign.” dr. c’s recommendation is a bilateral mastectomy. i have an mri and gene testing that day. chemo and radiation are questionable at this time, as is most everything.
the mri was about as unpleasant as the mammogram. how surreal it was laying there, to have to lay there, listening to the instructions on the intercom, staring at a fake under water fish scene, that’s supposed to help relax patients. they give me headphones to listen to music and i choose channel 69- ESCAPE. this is all to try and hide the noise of the machine, well that is fucking impossible. dr. c calls me at 9 pm that evening with the results. Another “unfortunately” the MRI showed several areas of enhancement in both breasts and lymph node area. more tests need to be scheduled. I will soon learn to loathe the word unfortunately. Anyone that listens to pandora and has the version that comes with commercials is familiar with this phrase…unfortunately. thanks to the american cancer society for making me re live that moment after every 5 fucking songs.
my well behaved cancer has not been so fucking well behaved after all. as we all know, time is a thief. Jump forward to my surgery and the findings. as it turns out, my cancer is not well behaved and neither are my genes. the cancer has spread into my lymph nodes and i have 3 tumors all aggressively graded and my right breast is almost entirely cancerous. it is shocking to me that after all the tests they make you go through even prior to the surgery, they couldn’t see this?! what the fuck kind of bullshit is this?! this is modern medicine?! after 2 ultrasounds, 2 mammograms, an mri, a ct and a bone scan and you couldn’t see this? stop calling me a ‘conundrum’. so now, not only am i more cancerous than they thought but i also incidentally have a large mass on my liver, which i have been told ‘not to worry about’ and a genetic ‘variance’ as they call it due to the lack of data that exists about my particular messed up gene. As you can tell by now, I’m slightly jaded and bitter about ‘medicine’.
Just to give you a little info about my stupid gene as i like to call it, there are genes called the msh2 and msh3 gene. these genes combine to form a protein that fixes mistakes in your dna sequence. when someones msh2 gene doesn’t function correctly it results in excessive tumor growth with links to very specific cancers, at an early age. now, my msh2 gene as it stands is classified as a ‘variance’, due to the lack of data. this could change at any point. with every new genetic test that is performed all this info goes into a data pool where it sits until things can be re classified after more data is obtained. the unfortunate thing about this process is that a lot people choose not to undergo more extensive genetic testing because it’s information that we cant necessarily do anything with, just yet. they cant go into my genes, into my dna and make my stupid gene say c instead of a, which is an easier way to understand it. most people have c’s in this gene and i have an a or vice versa. so i just sit here and wait for my stupid gene to be re classified as a benign variance or wait for it to become a true mutation.
as my mom said recently and i say this with so much love and affection, because she is now learning to make cancer jokes too and swear, which makes me happy… “either way, you’re screwed.” i love you mom. she struggles with the unfairness of it all. i understand. i spent a year having surgeries, 20 weeks of chemotherapy, 6 weeks of radiation, and all i get is this? these odds, which i don’t particularly want to talk about or even try to explain. i have spent the last year being cut up, slashed, stuffed, poisoned, burned from the inside out. i realize how horrible this sounds but i feel as though the treatment for many cancers, especially breast is barbaric, it’s violent and there has to be a better way. i truly believe that it’s out there, but I’m just gonna say it… “CANCER IS A BIG MONEY MAKER, A BIG BUSINESS, MAKING A LOT PEOPLE A LOT OF MONEY.” except the people that actually have it.
just a little about the financial impact cancer has had on my life. cancer made me broke, even more broke than i was before. in the last year, cancer has cost me over $12,000 out of my own pocket. i worked through my treatment because i had to, more than one job. the bills don’t stop just because you have cancer. not only has cancer turned my world upside down and inside out, now I’m broke?!
i apologize for the length of this entry but i cant exactly leave any of this out, it’s all part of my story, my reality.
I think Ill write a bit about the breast cancer culture and how disgusted I am with a lot of it. I apologize if this upsets people that have a different opinion. This is just mine. I hate pink. I cant stand all the fundraisers to find a cure. we need to find the cause for god’s sakes. i resent being called a fighter, the pressure it puts on me is too much. i didn’t fight, “i showed up, i did what i was told.” society makes us feel that if you just try hard enough you can beat it, thats the message, just try harder. i reject the word survivor. it’s a put down of those women who don’t survive. i might go through all of this and it might not work anyways? we cant prevent it if we don’t know what causes it. how can you cure what you don’t know? its my own terrorist that grew within me, attacking me. every 69 seconds someone dies from breast cancer.
i felt alienated because i wasn’t wearing pink, i wasn’t attending fundraisers, i wasn’t using my voice. i locked myself in my room for a year and did nothing except watch netflix, cry and wish for it to be over. i know there are women that feel alienated by the overly optimistic approach. I’m one of them. “in order to be a survivor you must maintain this optimistic outlook and articulate in the tyranny of cheerfulness.” then there’s tamoxifen and the relation to pesticide manufacturing by the same company. The women with estrogen fed breast cancers have to/should continue treatment for 10 years to stop the body from producing something that it does naturally, that normal women need to continue life. i am turning into a scarecrow, they replace my damaged parts with unnatural forms, they use other drugs to suppress what my body does naturally. am i even still a woman?
sometimes when i have to tell someone what kind of cancer i have i whisper, like i am ashamed, embarrassed that i have a super lame, overdone, popular breast cancer. we are all sick and yes some more so than others and yes breast cancer is overdone and we should be grateful and feel lucky that we have one of the most studied and researched diseases but it doesn’t make it any less significant or any less hard. and then there’s the guilt. for the moment i am here in this life and don’t ever for a second not have that in the back of my mind. the knowledge and proof, that comes from my bitter/sweet existence on this earth. there are others who are not here but i am.
please don’t look at my photos or read this and feel sorry, don’t feel sad. i am more happy in this moment than any before. feel happy for me because of this, regardless of the origin or the cause. i feel free now. i feel love. i have grown. i have let go. cancer is my blessing and my curse. i have been cured in so many moments just with a smile by someone i love or a random message of hope from someone i barely know. i have been touched by so much unexpected kindness. i cant finish writing this without acknowledging the connection i had with my oncology team. the nurses have become my family and when i was so suddenly forced to live without them, i struggled. i love them all so very much.
i feel I’ve made peace with the idea of death. i understand the consequences of not following medical advice at the moment and to be completely honest I’m ok with it. it’s my life not theirs. i just don’t want to leave this earth feeling like there was a little piece of me still missing. i feel like i am filling up; somedays faster than others. most days now i am happy but I’m traveling around the world for the next year. i still feel like i have something to do down here. I have decided to put certain treatments on hold. i feel more healthy and more happy without them right now. My body is begging for a break, my soul is begging and i will now give it what it is asking for. it’s a hard fact to process, knowing that your own body is harming itself and there’s nothing i can do about it except keep taking pills, injections, removing organs to help prevent a recurrence. maybe if i just focus on being happy and being out, living it (THANK YOU FIRST DESCENTS!), maybe that is a better treatment for me, not for everyone but for me.
So jump forward to where the worst part is supposed to be over. However, sometimes the worst part begins after treatment and I know a lot of people will understand this. Im left with the effects of treatment. these things don’t go away. they are here to stay. so i had a year of treatment to help kill the cancer in my body but the potential effects of the actual treatment itself could be more detrimental.
backing up to the beginning of this year, i struggled to find my place within the cancer community. i was too young for some groups, too old for others, too single, too childless, too advanced in disease. Many of these groups or programs were not beneficial for me at all and to be completely honest, made me even more angry. I finally participated in a program through an amazing organization called first descents. i spent a week with other ‘cancerful’ people my age and it changed my life immediately. i finally felt like i belonged, i fit and it was ok to make bad jokes, it was ok to be quiet, it was all ok no matter what. I came home from that and left my job, sold my home and decided the one thing i want to do with the next year of my life is travel so that’s what I’m doing. I have already been to Colorado ice climbing, a beach vacation with Mom to Turks and Caicos, a yoga retreat in Costa Rica. Next March Im heading to South America, to travel through Patagonia by horseback. I recently left NH to take 2 months to travel through the Southwest United States. My horoscope that weekend said this: “envisioning the future is a creative act that comes naturally to you. because of this vision, you are the perfect person to lead a group of people with similar goals and interests. you’re willing to travel across the country if need be, but are you willing to travel to the most complicated parts of yourself? should you decide to take the risk, extraordinary things will happen.” holy shit right?!
to end this post, i want to re iterate that i have found something better in this life, something worth exploring and that’s myself. i am finding my new self and i like what I’m finding. it’s ok if i don’t go back to what was. i will move forward with hope for happiness and nothing more because after all, “the only side effect of fighting for recovery, is finding happiness”.
“ The truth is, life is full of joy and full of great sorrow, but you can’t have one without the other.” Andre Dubus III
Now that i got that out, I’m off to climb a mountain in the desert! That is my medicine today and for many days to come.