By Zoe
My name is Daniela alias Zoe, I’m 33 years old, going for 34.
I have been living and working in NY for the past 6 to 7 years. In NY, I'm able to do way much more that I could ever do in my hometown in Italy.
NY is a place I consider my artistic home. I can live and work in the U.S. on a 3 year artist visa. In fact, as of now, I'm busy renewing before it expires again.
On July 29th 2014, I flew from JFK airport, NY to Fiumicino Rome.
As usual, during the summer I go back to Italy on vacation, with the plan to come back to the States after 20 days, tops.
Not having medical insurance in the U.S., it is in Italy that I do my usual medical annual check up at my breast and ovaries.
There is some breast cancer history in my family but only from my father’s side, which would have been considered not really relevant.
Moreover, back in 2003, a suspicious nodule was found and I had to keep it under control by monitoring it. That year, I felt like a suspicious little ball growing on the right side of my breast. When I was raising my right arm it was popping up, stretching the skin and lightly altering the line of the breast.
I was a worried. My latest medical check up didn't reveal anything alarming. How can something drastic happen in a year?
My Diagnosis
On August 21st 2014, I was diagnosed a G3 Breast cancer at my right breast, infiltrating ductal carcinoma poorly differentiated; this is the exact diagnosis.
It seemed like the title of a movie or of a comic book from another dimension, from another time frame where all the serial numbers G3 of cyborg prototypes will have to be demolished by the corrupted military government cause inadequate, wrong and imperfect.
Just like a Manga vision.
Bottom line, I was dealing with a 2 centimeter and 7 millimeter neoplasia, chances are malignant cancer/ tumor.
Could it be true? Fine needle aspiration biopsy, technically answered this question and confirmed the diagnosis.
The doctors clearly told me that to allow the removal of the neoplasia, I would have to soon have a quadrantectomy surgery done, which is a cut that goes perpendicularly from the nipple to under the armpit. They also recommended possible post surgery radiotherapy sessions. These radiations are really harmful, among the many things they even have the power to change the DNA of the skin.
I was stunned, yet forced to have to understand all of it and quickly learn how to find my way out of this nightmare which was just at its very genesis.
Tests, Tests, Tests
Before anything, I had to do a NMR (nuclear magnetic resonance), a test that along a total body C.T. scan, would reveal possible presence of other neoplasia or metastasis. They still had to collect data on my case and they were not able to confirm that or anything with specific certainty, but some doctors already told me about the possibility of undergoing chemotherapy. Luckily, the C.T. scan didn’t reveal any metastasis but only an angioma on the liver, which initially scared the doctors, but later I learned it was congenital and therefore harmless.
The NMR revealed two more neoplasia of small size. I was told they would have to take out all the mammary gland and mastectomy was the only possible solution. They would completely remove my right breast. Some lymph nodes would also have to be extracted from the armpit to see if the cancer had spread outside my breast.
As if the removal of my breasts was not enough, I was told that 6 months of chemotherapy was also required. Whether this was going to happen before or after the surgery was not yet clear. A test that could allow the medical team to better understand when to do this treatment existed, but I was not aware of it at the time. Nobody had mentioned it. Thankfully the right oncologist informed me of it, which ultimately enlightened me on what to do. The existence of this important test was introduced to me only after being told all the possible consequences of the surgery.
The gruesome list that attacked my womanhood was horrifying.
I would be left unable to breastfeed, I would lose any sensibility, I would have to replace my mammary gland with implants. The possibility of removing my nipples was high and uncertain. It was only during the actual surgery that a test could have been performed to reveal whether tumor cells were present or not. I was doomed to have to enter the operating room without knowing if I would get out of it with nipples or not. That was a gamble I never imagined I would have ever had to experience in my life.
Genetic Testing
This last step might be the most important one for me. It consisted of a blood test that would inform me if the tumor was due to a genetic predisposition. If the test came positive there was a high risk of developing a tumor on both breasts, which meant that the removal of both breasts would have been likely. While waiting for the result of that test, I was left confronting the chance of a double mastectomy. As if that was not enough to fear, the doctors also informed me that if the test came back positive then in the near future, right after a potential delivery of a child, I should also have my ovaries removed. Really? Well, thanks for nothing.
Fear, Panic, and Struggle
The genetic test came back positive.
Procedure and protocol became some of the terms my brain would have to get familiar with, as I had no chance but to accept 6 months of enduring chemotherapy and a double mastectomy: 9 months of my upcoming struggle.
To console me, everybody kept saying: “Angelina Jolie did that too.”
The Therapy
September 18th 2014 was the day before I started the first cycle of chemotherapy. That day, a series of intramuscular injections to stop my ovaries from working and would force my body into a menopause. They inserted a PICC line in my left arm- an intravenous catheter where they would infuse the powerful chemotherapy medication and keep my veins safe. To shower, I would have to wrap that part of my arm with cellophane and tape it very securely. This lasted for 2 months.
That first morning brought me a panic attack. I had many thoughts and I could not even keep up with all of them.
I was sure I would have soon turned into some sort of an avatar. I would be left hairless just as a cyborg. In my creative mind, I imagined being forced in a military-like therapy of 3-4 hours of IV, and it would all be set up by fears and phobias dates and days. Days which would have only brought nothing but horror- one I would have no choice but face and confront.
These injected medicines were considered smart bombs, but weren't that smart after all. They were just as smart as they could get.
Chemotherapy kills the bad cells, but also kills everything else including the white blood cells that support the natural immune system, so I had weekly blood tests to monitor how my body reacted to the chemotherapy.
While undergoing treatment, it was challenging to hear stories from other people. I didn’t necessarily want to hear people’s opinions. One specialist doctor provided a different perspective and information that I was forced to hear while I was in the waiting room.
My own internet search even further fed the overall confusion. Reading about doctors' implications in regards to the mechanics of the human body often felt shady, murky, unclear, and untrustworthy.
Wanting To Know More
The stigma of Cancer still exists, supported by the thousands of taboos that surround it. I asked tons of questions to those doctors who so arrogantly seemed like carrying the knowledge of where the Holy Grail might be located.
If you are not a doctor, if you are simply an ordinary human being, then how can you know or understand anything?!
I grew up with a particular hate for uniforms, or any authority that pontificates absolute truths, especially when such truth implies no way out. Only death is not irreversible.
I had questions! I wanted information.
As an oncological patient, I felt merely allowed to be given the bare amount of knowledge.
I felt like going back to being a child asking the many whys.
My personal confusion came with these unanswered questions:
How can I not have customized therapy?
How is it possible that all these procedures are standardized and impossible to change?
Why can’t I fully inform myself?
How can I change this dogmatic approach?
Am I a fool and a dreamer to even raise these questions?
I had a hard time trusting anyone. As far as I was concerned, the conspiracy theories in my mind could have involved anyone. I never believed in pharmaceutical care alone, but rather, a holistic approach knowing that our state of mind, lifestyle, and habits, contribute to our health or sickness.
Nowadays, in my opinion, eating organic food has become fashionable. We can take for granted that yoga, breathing, practicing sports, and especially being in touch with nature can help your health.
It’s been since the 90’s that doctors talk about psychosomatic diseases, caused by stress: colitis, dermatitis, back pain, and so forth, to a point of actual traces of idiopathic diseases.
However when you question that the mind can actually influence anything, it all becomes a new gray area that seems impossible for any, some doctors to even consider. Why? How can I suffer a psychosomatic symptom and not give my mind the same credit to do the very opposite?
Body and mind are connected. I believe our minds can influence our body in both bad and good ways.
Easterner philosophy and popular folk knowledge influences and supports this theory. Both for different cultural reasons even believe in the elevation of the spirit that can come through the pain, sacrifice, and penitence of such experience.
My breast cancer diagnosis has allowed me to discover why I live - Why I die - Die? My intention wasn’t to die. I had never even considered dying.
Double Mastectomy
Luckily, early stage breast cancer is treatable, if not curable. For that I was grateful. I would not die. I had no choice but to trust what I was told. But I launched a search and collected all possible opinions to gather confidence to be doing the right thing.
I called and sent emails to almost all of the best doctors in Italy.
Everyone agreed: Double mastectomy was the way to go.
Everybody kept saying: “Angelina Jolie did that too."
My Hair Became Hats
July 19th 2014, 7:30am, my first cycle of chemotherapy.
3-4 hours on a hospital bed with a series of IVs attached to the PICC line on my left arm. A nightmare with eyes wide open. I read, slept, and cried.
Memories of the many movies about it kept rushing in my mind.
Hell just began.
I was only surrounded by women older than me. I was the junior in my nightmare. In my mind, the question was, “Why me?” and “When will I start feeling sick?”
I knew well that within that same day that I would have started feeling the initial pain of the procedure.
6pm First Symptoms:
Nausea
Gagging without ever vomiting
Headache
General sickness and pain that exhausted my body in ways I never knew possible
Bloated
Anxiety and depression (of course)
After The Therapy
I alternated diarrhea with constipation.
The list of symptoms is long. Here are a few: Fatigue, a burning sensation in the throat, and a lack of appetite. Chills and trembling. Hot flashes and heavy sweating every 10 minutes. A perennial chemical taste in my mouth. And I felt other things I cannot even fully describe or even knew were possible.
I felt like a robot. Or maybe I wished I was a robot. I would have felt nothing if I were. I was still human. But often I was not sure what was left of me.
During this time, I smoked weed and ate very healthy food. I followed the suggestions of a rather prestigious biologist and separated food from alkalizing and acidifying. No sugar, no dairy (I had already quit all of that a while ago anyway), no eggs, and no soy (contains hormones). No meat. I was also allowed only white meat but not too often. Small light blue fish was considered an even better choice, but again to be consumed rather rarely. I ate lots of cereals, seeds, sprouts, roots, and vegetables. I started meditation, and yes, I even embraced dancing again.
On October 3rd, I turned 33 years old... 2 days after my hair started falling out.
This did not come as a surprise, of course. But being that in nature and for mere fashion, one of my favorite hobbies was dying my hair any possible color and since I even often shaved it by choice, I was sure that for someone like me losing it would have been the easiest part of this quest.
It wasn’t.
To prevent the shock of such an experience, I was advised to cut it short. I already sported a short hairdo, so I just left it alone. Unfortunately, I had to experience the horror of the first shower that left me with chunks of hair right in my hands. Each time I touched my head, my hair kept sticking to it. Each time I touched it, it horrified me. It fell out like an untangling sweater that ultimately becomes completely undone.
In dismay I got out of the shower. I used my blow dryer to dry what was left of it. So much of it just blew off me. I felt like an animal in its first stage of being skinned.
I had not yet accepted that the only thing for me to do was to completely shave my head. So as a solution, I just trimmed it all short.
I bought hats and scarfs.
But hair kept falling, all of it, including eyebrows and eyelashes. I found it everywhere.
Even the shortest of my trimmed hair kept falling. It looked like a trace of me was being left behind me. I could no longer cope and completely shaved my head.
When I weighed myself, I barely reached the 113 pound mark.
I felt almost nil, but I kept fighting and fighting, and even when I thought I couldn’t, I did. When I couldn't fight for my own self, I fought for my mother who has always been there. Gifting me with the joy to live and relentlessly by my side all along. Motivating me to keep going.
Right after the very first session, the tumor started regressing.
The little ball was getting softer, thinning... and ultimately slowly disappeared.
Great hope that everything will get better soon was finally plausible.
Embracing My Life Again
November 21st 2014: After 4 cycles I was done with the hellish cycles. They removed the PICC line from my arm. But before doing that, I decided to indulge in an artsy nude photo shoot for my own self. I wanted to visually immortalize this moment as to respect my struggle and my relentless fight. To never forget this version of me I would never ever want to be again.
I took 10 days away from it all and went to London and Berlin to try getting my mind off the whole ordeal. Once back home, I had to start a weekly therapy, but I was told it would be less aggressive.
The therapy was indeed much kinder to my body, besides some fungus and pain on nails, there were less excruciating side effects, or maybe I had now gotten used to some of its discomfort. I did not dare to complain much and chose to look ahead instead.
The end of the tunnel was visible at that point so I kept walking.
Hair would grow back, but I felt much weaker than ever before.
Christmas and New Years came and went.
I finally could go back to doing yoga, because I no longer had a PICC line. I kept meditating and of course danced away as much as I could.
I kept counting the weeks left until the surgery -8, -7... and so forth.
I was aware that there was a chance for my white blood cells to freak out again and consequently be forced to skip some therapy cycles and slow down my way out of this tunnel. “I will not let this happen,” I told myself.
Of course, I was left weak by this whole invasion of my body. I knew there was always the chance to postpone these cycles because of a cold or a flu or any other ordinary condition. I dread that chance and vowed I would not allow my body to delay nor extend this last part of this therapy.
I wanted out. That was all there was in my head. I wanted out!
I had to be back in NY and I had to embrace my life and creativity again.
March 5th 2015 marked the end of the therapy.
March 31st 2015 was surgery day: Double mastectomy.
April 28th 2015, finally back in Brooklyn, NY.
Angelina Jolie was not there though!
On October 26th 2021, I had my Bilateral Salpingo-oophorectomy surgery in NYC. I have health insurance now; I got it during the pandemic.
I’m in menopause, I’m on psychotherapy (it’s been 2 years), I’ve done ayahuasca twice, and I don’t take any medicine.
Thank you for sharing your story, Zoe. SBC loves you!
Connect with Zoe on Instagram: @zoemap
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