Cancer Warrior Amanda Niello
I was diagnosed on April 6th, 2015 with stage 2 breast cancer. At the time, I was 28 years old, living in New York City, had just gotten back together with the absolute love of my life, was part of a wonderful community with some of the coolest, smartest girlfriends; you could say I was living my best life. Then...cancer happened.
The person I had just gotten back together with was living in our old apartment in San Francisco, but he thankfully was in NYC when I got that call from my doctor. I was referred to an incredible oncologist at Memorial Sloane Kettering in Manhattan, where I had back-to-back meetings and exams every day for about a week straight. He went to every appointment with me, took all the notes, helped me with the endless insurance stuff, making treatment decisions etc. We decided together, that I would move back into our apartment with him and our dog, Moby, in SF, go through the fertility preservation process and then start chemo. Like holy F*&KING SH*T! My life had just gotten super interesting, to say the least. I had this fantasy that we would do this together. Partners forever. Have a beautiful happily ever after. LOL yeah right.
My mother, who lives in Paris, flew out to California to be with me for the fertility process, and to take me to my first 3 or 4 rounds of chemo. She was with me for about a week before she decided to get on a flight back home to France. I wouldn't hear from her again until August, when we'd have a very difficult reunion at my sister's wedding. I was a shell of a person from all the poison that had been running through my veins for the last 3 months, but she didn't care to talk about it or ask how I was and was a less than gracious guest at the wedding towards my whole family. We've had our ups and downs but cancer really got the best of our relationship. This is one learning I still struggle with: some people can't handle crisis. I still can't quite wrap my head around the fact that the two people, boyfriend and mom, who were steadfastly by my side at the beginning of my journey, are now completely gone out of my life. Things just completely fell apart. Another important lesson in this, is that it was not my fault. It's taken a while to realize this and I'm still working through it but nobody is perfect, and we all have our faults, demons, fears...whatever it is that makes us not able to show up. My ex and I still talk every once in a while but I always have to stop to catch my breath when I think about how quickly these 2 humans that I loved so much started slipping away, and were eventually nowhere to be found.
Now on to my PEOPLE. My Dad and sister were and are my angels. Talk about being by my side and never leaving. They went to every chemo appointment with me. Every. Single. One. You know how you can tell in some people's eyes that they really really really love you? I could see that in their eyes whenever we were together and the feeling I would get in my heart from those looks, well, I think those looks saved my life. They waited in the doctor's office with me every Tuesday, starting at 8 am, not to see a doctor or nurse until 11 am or noon. In that waiting room we would laugh, share stories, gossip, sing, talk about old memories of growing up, cry our eyes out, take naps, hold each other. When we'd finally leave the hospital in the evening after a dizzying and grueling day of meetings, procedures, transfusions and scheduling, we'd do dinner or grocery shop, or just drive home in exhausted silence, exchanging looks, knowing exactly what each other was thinking, not having to say one word. I will never ever forget these days, and they both remind me constantly that they won't either. I am so lucky.
The first round of chemo, starting in May, was 8 weeks long - Taxol and Ganetespib (which was the trial drug). I always laugh when I think about that name because forsome reason, NONE of the nurses could ever pronounce it. They would ask me how to say it after studdering over it 5 or 6 times and that always cracked me up. After those 8 weeks, I was allowed a 2-week break to give my body a rest, and then dove right into A/C - the red devil...that one really got me. I started losing my hair about 3 weeks after starting chemo in May, and that, of course, was nothing like I could have ever imagined. Losing all that hair so quickly is not only emotionally painful but physically painful as well. It's like your scalp is going through all this trauma and it's sore and dry and bald....and then to have to look at that in the mirror is like a cruel joke. I lost every single hair on my body which is really interesting to discover how much hair we actually have, and also where a lot of that hair is!
I became so sick from chemo that I had to miss the last A/C session (thank heavens). I was nauseous, frail and weak, out of life, emotionally and physically drained. So defeated by the drugs, the loneliness and seclusion, I really thought I was going to die. Thankfully after chemo ended, I started healing, very slowly, and went in for surgery in October - about a month after my last chemo. I decided to undergo a double mastectomy where they would put empty implants in called expanders, under my pectoral muscles, to be filled up over time to stretch those muscles so they could support the permanent implants I'd get about 10 months later. Super weird feeling but, like anything, you get used to it. Drains are a necessary part of this procedure, and getting those puppies removed was a feeling I was definitely not prepared for. They are basically 13 inches of perforated tubing, coiled up and around the implants, around your muscles and all the gross blood and guts, so your body can get rid of all that extra fluid that happens after having the tissue in the breasts removed. And guess what? They just yank them right out. No numbing shots, no pain meds, no nothing. Thinking about it makes me squirm. My sister was there for that one and as she held my hand while the nurse pulled them out, I think maybe I broke a few of her fingers. Sorry!!!
I started radiation the following January. That was every weekday for 5 weeks. It was a hard treatment, but I did it. Towards the end of radiation, mid-February, my boyfriend's mother flew out to be with me. She lives in the UK and made a special trip out just to accompany me to my last few appointments to give me some love. That is a special time I will never forget. Heather is like a mother to me and gave me that motherly love I needed. That's one beautiful thing about my story is when people showed up, they really showed up. Going through such a tough time in my life, it made all the difference to feel love and support in such a strong way, even if they had no idea what to do or say. It's just about showing up, being by my side, holding my hand, and maybe getting ice cream after. I love you, Heather.
The following August I went in for my last surgery, which was the reconstruction. My hair was starting to grow back, I had an appetite again, the nausea was almost gone. That surgery went very well and I am super happy about the way my boobies look. The doctors even preserved my nipples and somehow I still have feeling in the right one, which is crazy because the right side was the cancer side, AND that nipple was cut open twice. I am very very grateful to have gone through all these surgeries in this day and age - another silver lining I am thankful for.
So that's a very quick synopsis of my story, but I did keep a detailed blog as I was going through all this stuff. Check it out at HERE.
To date, I am struggling a lot, emotionally. I feel like I have this heavy anger deep inside my soul which comes out every once in a while, and scares the hell out of me. It's like the "red devil" got in there and stayed put. I long to feel lightness and happiness and all the things I used to feel pre-cancer but I've come to the realization that I need to be patient because the healing process does not happen overnight. I am a completely new body, mind and soul which will take some getting used to, just like how I got used to those dang expanders. There are some days where I wish the emotional pain of losing so much would just go away. How can I make it go away? But I have been getting better at coming back, centering myself, completing a gratitude check, maybe taking a little nap or smoking a joint to get me back in a place that isn't so heavy (sometimes even dreamy if the nap is deep and the weed is dank. hah).
I've also been looking forward to working more with Cancer Warriors because I am fairly certain Sara saved my life. I was spiraling down a dark hole with no idea how to get out. Loneliness, fatigue, menopause from hormone therapy, low self-confidence and heartache were all getting the best of me and it was becoming too much to bear. I can't remember how many times I googled "rate of breast cancer survivor suicide" because I wanted to see if what I was feeling was normal...I was struggling so hard, I was desperate to find a connection to anyone that went through what I did, and did what I wanted to do. Is this normal to want to die, after fighting so hard for my life? How does that make any sense? I can't remember exactly how it happened but I think Sara kind of popped back into my life, out of the blue (we spoke once on the phone about a year ago after a friend connected us but lost touch, as people do). I think she could somehow feel my pain. Call it a vibration, energy, the stars aligning, whatever - I will never forget that day we talked. We spoke on the phone for an hour and a half....well, she talked, reassured, comforted, and I cried.
I am really looking forward to being a Cancer Warrior, and there's no better time for the foundation to work on it's Bay roots. I know firsthand how much this disease can mess a person up, so if I can lend the same support and love that Sara has lent to me in just the last couple of weeks, I think I can say I've done my job as a survivor, and Cancer Warrior.
Love to you, and please know that you aren't alone in this disease. Ever.