Amanda Niello, Writer, "Thanks I Have Cancer"
Meet Amanda Niello! Amanda is our super inspiring friend with an equally inspiring blog called "Thanks, I Have Cancer". Her visual and written online project is revolutionizing the way we think about breast cancer by candidly documenting what it's really like to be a young woman faced with such a life altering situation. Amanda is a shining example of the powerful healing properties of maintaining a lively spirit, and most importantly, a sense of humor! Today Lisa Says Gah brings you an in-depth conversation with our favorite Warrior Woman of the moment. Enjoy!
LSG: Hi, Amanda!!! Thank you SO much for sharing you story with us. Let's jump right in! You are obviously way more than the cancer you are experiencing right now. The spirited tone of your blog expertly communicates that, yet your current day-to-day is about beating this beast. Can you give us some background on you sans-cancer? Passions, career, adventures?!
It’s interesting how being sick all the time makes you realize what you miss most about normal life. I’d say the things I miss the most are being able to travel whether it’s a road trip or somewhere overseas. I’ve had some great adventures with my boyfriend and family, so once I get better I am going to try to go on as many adventures as I can and really take advantage of feeling good. As for my career, I’ve decided to go back to school. I realized I don’t want to be caught up in a job that I don’t love anymore, and life is too short to not live out your dreams! I’m hoping to attend The Academy of Art in the spring. I’ve always been obsessed with fashion so I’m hoping I will be able to make a career out of that!
LSG: Cancer is not something most 29-year-olds have to think about. Would you mind sharing the story of your diagnosis with us?
It was last October when I felt a lump in my right breast while doing a quick self-exam, but I decided it was nothing and ignored it. It’s so difficult to tell for younger women because we all have lumps and bumps and how are we supposed to know if we should be worried about these kinds of things or not?! My boyfriend ended up feeling the same lump in February and urged me to go to the doctor. I had just moved to New York in August so I didn’t even have a dentist, let alone a lady doctor! I had no idea how to go about finding someone to check me out for possible cancer, so it was a stressful couple of days. I finally found a walk-in clinic and had the lump examined.
The minute the doctor felt it, I knew from her worried facial expression that it wasn’t good. She put in an order for me to have a sonogram and a couple of days later I was in the radiology room with a ton of cold gel on my boob and a little probe thing sliding around on the lump (it was very uncomfortable to say the least). Another doctor was called in to look at the images, and he announced very firmly that I needed what I was most afraid of - a biopsy. I was so terrified of getting this procedure done, but there was no way out! I had the biopsy, which wasn’t as bad as I had thought, even though I fainted right before! Not a fun afternoon.
I’ll never forget the night I got the news. It was around 7:00 on a Monday evening. I was taking a nap when my phone rang, and little did I know that my world was about to be turned upside down. I actually ignored the call because I didn’t recognize the number, but when I listened to the message from my doctor and she said “it’s an emergency”, I knew right away that it was cancer.
I called her back and left a voicemail on her machine, which it only took her about 3 minutes to call me back, but it seemed like 40 years. I got myself so worked up, I was sweaty and shaky and felt like I was going to explode! When she called me back and used the C word, I went completely numb. As you can imagine, a trillion thoughts ran through my head and I just had no idea what to say or do - it was horrible. I can easily say, in that moment, I had never felt so alone in my whole entire life.
After the call from hell, I immediately called my Dad, who has always my go-to person when something bad happens, and somehow, he calmed me down and made me feel like everything was going to be ok. If you don’t have someone like this in your life, I recommend getting one right away. My doc got me set up for an appointment with Memorial Sloan-Kettering Cancer Center in Manhattan the next day, and from there is where my journey to get better started! I met with some doctors at Sloan, which is one of the best cancer centers in the world, but decided that it would be best for me to move back to San Francisco to be closer to my family while I go through treatment and surgery.
LSG: Tell us about your decision to start the blog and "go public" with your process. What types of unexpected benefits have arisen from your work with it?
I’m not a super private person and I figured that this diagnosis gave me a really great platform to spread the message that if you feel like something isn’t right, go get it checked out! I feel so lucky that my boyfriend, Tom, pushed me to get the lump examined. If I had let it go any longer, it would have kept growing at a pretty rapid pace and traveled into my lymph nodes, so I really wanted to share the message that we aren’t invincible like we think we are!
The first unexpected benefit that I discovered through my blog is that I love writing. It feels really good to get my experiences out on “paper”, and it helps me to understand what exactly is going on in a more concrete way. The last few months have been VERY emotional, so it helps to write everything down and re-read it, and let my mind process what is really happening. It’s also been a great way for my family and friends to check in on their own time to see how an appointment went, or where I am with treatment without having to repeat myself a million times, although I honestly don’t mind talking about it over and over, that’s kind of cathartic too. I have also had a lot of people reach out to me to say thank you for being so honest about what is going on and sending a lot of encouragement, so that’s huge, especially when I’m having a hard week. The support I have gotten from the blog alone has been insane and I feel so thankful for all the people following along with me while I’m on this crazy journey.
LSG: Who do envision reading it?
The blog was originally intended for my family and friends to follow along with what’s happening, but I was also hoping that there would be some young women reading my story who might feel inspired to take better care of themselves, or like I said before, go get a lump checked out or whatever it is that doesn’t feel right. I had someone tell me they are reading my blog because they have a close friend going through the same thing I am, but isn’t as open about her diagnosis, so it’s helping her to understand what her friend is going through - I really liked that.
LSG: In your blog, you talk about the fact that you are going to have a double mastectomy and reconstructive surgery. (So essentially you get new boobs! - one way of looking at it) What are your thoughts and feelings on this?
That’s exactly right! I’ve always wanted smaller boobs so that’s a silver lining for me - new boobs! I’ll also be getting a nice lift too, so I’m pretty excited about that. I never thought I’d have any plastic surgery done to my body, but this is an opportunity I couldn’t pass up.
I originally qualified for a lumpectomy and that’s what everyone thought I was going to go for, but I decided I don’t want to wake up every morning feeling afraid that there’s a possibility of going through breast cancer again, so I’m gettin’ rid of the girls! I’m excited because my surgeon is one of the best in the game. She helped with Angelina Jolie’s double mastectomy surgery, so I am in good hands!
LSG: You have a lot of "lady" things to think about now, boobs AND ovaries! Having children (or not) is a big decision for most women. Chemo pushed yours to the foreground. Can you tell us about your decision to freeze your eggs?
I didn’t think I would have to think about kids for a while, but I was forced to when I was diagnosed, and I had no idea freezing my eggs was going to be a precaution I would have to take before starting chemo! I decided it would be smart to do, just in case one day I want to have babies but am not able to because my ovaries shut down permanently, which can happen from chemo; it’s a small chance, but it was also a small chance that’d I’d get breast cancer at my age so I decided to go for it!
LSG: You've had to go through SO many things that you probably thought you couldn't handle - has this process made you a stronger person? Have you been surprised by your resilience?
Absolutely. There are some really scary things I’ve had to go through, like getting my port placed - I was awake for the entire surgery! I was so terrified of the process (having a tube fed through the jugular vein all the way to my heart is no joke) but after it was done, I felt so brave and really proud of myself. Every little hurdle I have jumped over, like the port placement, or a biopsy or a chemo session, has definitely made me feel like a stronger person, and prepares me for the next scary procedure or appointment in a more confident way.
There are some days, though, when I just want to fall to the ground and cry my eyes out (which I’ve done a few times) but after that, I know I have to pick myself up and keep going. I think I have been pretty resilient in that way, or at least I’m trying!
LSG: You have the support of your amazing family, and I'm sure this has brought you guys even closer. You mention that we all (sick or healthy) could be a little better about accepting support. What other lessons like this have you observed?
This has absolutely brought my family closer, it’s been really amazing. My dad, sister, brother and boyfriend have been so supportive and by my side every single step of the way, I feel really lucky to have them. It’s been really interesting to see who of my friends have been there for me and who hasn’t. I’ve been hurt by a few people who I thought would be by my side but instead disappeared, so a big lesson I’ve learned is to let those hurt feelings go. Everyone is different and some people just can’t handle sickness so I’m learning to forgive and forget - that’s a really freeing concept that is hard, but essential.
LSG: As much as this process of chemo is about regaining your health, there is a lot of loss involved - hair loss, weight loss... Can you speak to your relationship with attachment before and after beginning chemo? Is it easier to let go of non-essentials? Have you become a bit zen?
These days I try not to get as worked up over small things as I used to. I think the forgive and forget philosophy is a big one for me because I’ve realized all the small and petty things that can happen in life really don’t matter that much after you’ve gone through all the losses you mention. Losing my hair has been pretty traumatizing, but I try to remember that the hair loss means the chemo is working, and I’m on my way to being cured, which is the most important thing I could ask for. It’s been hard because I don’t get to do a lot of the things a normal person gets to do every day, like have a cocktail with friends, and some days it’s impossible to even get up and go for a walk, so on the days that I feel good, I savor every moment and really take advantage of feeling “normal”, so there’s really no time to get upset about anything, therefore I have become somewhat zen!
LSG: Showing (though your energy and your blog) that people with cancer are still capable of laughing, living and making fun of themselves is HUGE. You are actively challenging how "patients" are perceived. What is the most important thing you hope people take from your experience?
It can be quite hard to see the silver lining or humor in cancer, but that is something I decided I would be doing a lot of from the minute I was diagnosed. One reason is because I didn’t want anyone to worry too much about me and I wanted to try really hard to go through this with a smile on my face. The mind is a really powerful thing and your body believes what it thinks, which is a scary concept but also really important to understand. As sick as I’ve been at times, I knew it was important to try my hardest to be positive and believe there is a bright light at the end of the tunnel, and that’s helped me in my journey to getting better. I hope some people will be inspired to think positive thoughts and see the silver lining in times that are hard because it really does make things easier. That being said, I think it’s just as important to be honest about how you feel, and if there’s a breakdown on its way, that’s totally fair. It feels really good to cry or throw something or punch a pillow when things aren’t going your way, so I say punch away! And then get your eye back on the prize.
LSG: Looking back on your treatment, is there anything you would have done differently in order to make yourself more comfortable or to make the experience less traumatizing?
It’s impossible to prepare for an experience like the one I am going through. The doctors said it was going to be tough, but I had NO idea. Looking back, I probably should have joined a support group for women going through the same thing I am. There have been so many times that I felt really alone and thought no one could understand what I was going through. Now I get why there are support groups out there, to make us feel not alone! That kind of support would have made things easier not only for me, but for my loved ones as well. It has been a heavy task for my peeps to take care of me so to take some of that pressure off of them it probably would have been good to be part of something like that.
LSG: What are you most excited to get back to after you're in the clear?!
To be completely honest, I am really excited to have a big old glass of wine and maybe a night out with my friends. I miss being able to just let loose and have fun!!!