Forgoing Reconstruction: Meet Nikki
By Rethink Contributor October 16 2018
Here is Nikki’s story.
I’m not sure how you feel when you have to fill out your medical history but mine’s starting to feel like I’m a dinosaur. Now when I have to fill out a ‘medical’ history report (outside of something really serious) I skip straight to the “other section” and write: Alive and well because the new reality is that I am alive and I am well. It also just makes me feel better than to circle all the ‘things’ and check off all the little boxes and try to squish in all the long sentences that don’t really fit into any of the spaces they provide.
The first time I was diagnosed with cancer, I was home alone with my daughters, Sofie who was two months old and Charlotte, who was 18 months. It was a rainy day in July 2015 and my husband Victor was away at an event. Caring for two babies is challenging on the most normal of days, but that day Charlotte had managed to shove four peas up her nose and I couldn’t get them out. While I was trying to deal with that minor emergency, I was also awaiting to hear back at my diagnosis. Let’s just say it was a bit of a cluster f%#k.
During my last pregnancy, I had been followed very closely for HSIL (high-grade squamous intraepithelial lesion) of my cervix – we knew that it had come and gone with my first pregnancy and we understood that there was a small chance that the high grade cells could turn into cancer when I was pregnant, but cervical cancer is typically slow growing and I think there is always an overall sense of ‘well it won’t happen to me’. Nothing really prepares you for a phone call from the cancer hospital.
The phone call went a little something like this…
Receptionist: “Hello… this is Princess Margaret Hospital calling, your Doctor has referred you to an oncologist and your appointment is Monday morning at 8:00am. Do you have a pen handy?”
Me: “Umm… so I guess that means that my biopsy results aren’t so great?”
Receptionist: “…. (long pause followed by even longer silence) – so you haven’t spoken to your doctor?”
Receptionist: “I’ll have to call you back.” – hangs up.
The fact that it was a Friday afternoon and the woman on the phone said that my appointment was first thing Monday was alarming. Terrifying, actually. I assumed that it wasn’t great news… but to be left hanging, home alone with two babies on a rainy day was not ideal. All I could think was, I can’t believe that Charlotte has four peas stuck up her nose and I think I have cancer?
I was diagnosed with Stage 2b cervical cancer in July 2015 and underwent chemotherapy and radiation. I blogged about the entire journey here.
Less than two years later, in May 2017, Sofie ran into my right breast in the morning and just 20 minutes later at the park, a woman came running up to me asking me if I was alright to which I replied. “Umm… yes? What’s wrong?!” I looked down and I had bled through my shirt, knowing right there and then it wasn’t good. I was bleeding through my right nipple and it was a considerable amount. When you’ve been in the ‘Cancer Seat’ it’s hard to not let your mind race, every ache, pain – is the Cancer back?
Tests revealed I had an Invasive Ductal Carcinoma In Situ (DCIS) Breast Cancer with a small component testing positive in one of my lymph nodes. Surgery was a must – they explained the way the DCIS had spread, they couldn’t save any of the breast so a complete mastectomy on the right side was the only option. In that moment there was a rush of sadness and then a mix of emotions, one of them laughter because the very thought of being diagnosed with a completely new cancer was insane – here I was spending so much time worrying about the cervical cancer coming back, not once thinking about a completely new cancer.
My choice for no reconstruction was personal and intuitive.
I decided on a bilateral mastectomy with no reconstruction. It all happened so fast and having to make such drastic choices in the midst of dealing with such a vicious disease is overwhelming. I was sent to plastics just 45 minutes after I had officially been diagnosed with an invasive breast cancer. I stood naked in front of my close family while doctors touched, examined my body, tapped my tatas and squeezed my abdomen fat to see if it was viable to cut out and stick back on my chest. It felt like a mix between a bad science experiment and how small toddlers treat their broken dolls and put them back together.
We have one of the best medical systems in Canada however the downside to this incredible and efficient system is that decisions have to be made quickly. In my gut, I knew a bilateral mastectomy was for the only decision for me as the other options just didn’t feel right. The only thing that I was 100% comfortable with was to remove both breasts even though my left breast was ‘healthy’. My medical team fought to save the ‘healthy’ breast and encouraged me to consider reconstruction as they felt strongly that I would regret my decision to have a flat chest. But in my heart, I knew it what was best for me.
Why are we so hell bent on ‘fixing’ and pretending nothing has been ‘taken away’? I don’t have anything against reconstructed breasts, (I used to talk about having a ‘lift’ or ‘implants’ for my 40th one day after the kids!) but it’s different when your own body is fighting against you and you are put in a position to make a decision that isn’t really yours. My concern is how are we dealing with everyone’s deep sense of ‘loss’’ in all of this mess?
Every time I go for a follow up, every nurse, doctor and fellow wants to know if I have changed my mind about reconstruction, but they don’t want to talk about the ‘real life’ questions. The ones like how I can integrate back into society as my entire world has shifted and the community who I thought was my community can’t handle the ‘new me’ or how my fatigue is so strong some days I don’t feel it’s safe to drive with my children in the car.
I think everyone assumes every woman would opt for reconstruction to avoid a huge loss. But it’s not just as easy as piecing body parts back together; the entire process is devastating. For me, I needed to grieve the loss of my breasts and it didn’t feel right to ‘replace’ them with something that wasn’t mine. This was my second cancer diagnosis in just two years and I heard the strong message that my body wanted to heal and I needed to give it the best opportunity to do so.
I also choose not to wear a prosthetic bra, something I’m completely comfortable with but not everyone around me is. I’ve been told “It’s not the norm. I also get all kinds of questions, comments and judgments and had to re-learn how to speak to people about it because I found myself stretching the truth to make people feel better and that’s not good for anyone. In the beginning, people would ask when I was planning on reconstruction and I would answer, ‘oh…. Not right now – maybe later’ when the truth of the matter was that I had no plans for reconstruction – ever.
Throughout this process I have grown to understand a deeper sense of my true nature. Cancer forced me to be a student of life. It has and will continue to bring unforeseen challenges to me physically, emotionally and spiritually. I have experienced some of the darkest sides of me but I have also witnessed some of the brightest light coming out of me and others, and that, I am grateful for.
I’ve been asked many times for advice on cancer/life/reconstruction and my answer every time is listen to your gut. Intuition will be your best tool and what your authentic self wants most. My hope out of all of this is to inspire people to follow their heart and trust what their own knowingness is telling them because it doesn’t matter what everyone else thinks.
I just posted a picture of me in my undies with no breasts and it’s one of the most beautiful photographs I’ve ever seen of myself and other people share in how powerful the image is. I know and trust that my beauty and femininity lives within and I am more than just this body. For me, cancer is happening to ‘my body’ and not ‘to me’ and so I trust that there is a part of me that is untouched by anything and anyone and that is pure magic.