Dying for a Cure

“I have nightmare news, you have breast cancer.”

It’s been six months since I heard that sentence. For the most part, it’s been surreal. When I found out that the cancer spread to my liver and bones, however, those words became very real and suddenly felt like a death sentence. The nightmare has become my reality and as a new mom, I find myself struggling to celebrating life while also starring down my own mortality.

I don't want to be negative, but I have to be honest with others, and especially with myself...a stage IV diagnosis is grim. I am finding though that conversations around it often feel watered down. Most doctors, for example, no longer refer to stage IV patients as terminal. Instead, they use terms like advanced disease and chronic illness. Even in the breast cancer community, the focus is very much on the survivor/warrior archetype. I appreciate the power of positive thinking, but at the same time, I cannot ignore the truth: I will be in treatment for the rest of my life, and I will either die from cancer or with cancer. 

Every day, 108 women die from metastatic breast cancer in the U.S. alone. I don't want to be another statistic. I don't want my husband to be a widower and a single parent to our son. It’s frustrating to feel so powerless. I guess that’s the best word to describe how I felt when I learned that the cancer had spread; I was frustrated and to be really honest, I was frustrated with myself. I had done everything I was supposed to do. I had my major surgeries, I took my medications, I received chemotherapy, I even wore the damn pink ribbon, and yet, my cancer was spreading. While my oncologist assured me that it had nothing to do with me/my actions, that my cancer is just super aggressive, I couldn’t help but second guess myself. Turns out, I wasn’t the only one questioning how this happened. “What did she do to get cancer,” someone point-blank asked my younger sister.

What did I do to get cancer? Well…I had breasts. Anyone with breast tissue is at risk for developing breast cancer, even men. I also have the BRCA1 gene, so that too put me at a higher risk. Doctors and scientists are unable to pinpoint an exact cause for cancer; they can only look at risk factors like that. But that’s not what he meant. He was looking for a direct cause and effect, and in a way, insinuating that somehow I made a slew of bad choices that brought this on. His questioning was borderline victim-shaming.

Make no mistake, I do not see myself as a victim. Instead, I consider myself an advocate. Just a few weeks ago, I attended a training program through an organization called Living Beyond Breast Cancer (lbbc.org). I met several young women from many different walks of life, all with their own story and struggle. Never once did I look at any one of them and think “I wonder what she did to get cancer.” None of us asked for this or saw it coming. In fact, a common sentiment that we all expressed is that we felt we were doing everything right. Like me, these women were blindsided.

Our weekend together was empowering and insightful. I met a few other “lifers” who were kindred spirits. We all came together with the mission to raise awareness and educate our communities so that people will stop asking what we did or did not do, and instead ask what is being done to find a cure. My “mets sisters” and I are literally dying for it.

Sometimes, this keeps me up at night. I head to the nursery and I look at my son. All I can think about is how much (or how little) time we have together. I hold him close these days, especially at bedtime. I am at peace as he sinks into my embrace and his thumb slowly falls out of his perfect little mouth. After I lay him in the crib for the evening, I find further solace in my husband’s embrace. We talk about life and about death. We cry, but we also find ways to laugh. We remind one another that even though we received “nightmare news,” we do not have to live every minute in that nightmare.

For additional information and breast cancer awareness please "like" and follow Jenny B. vs Breast Cancer on Facebook at www.facebook.com/JBvsBC. 

To make a donation in support of Jen and her family, please visit www.gofundme.com/JBvsBC.

Spilled Milk

After receiving the news that my cancer spread to my bones and that my spine is fractured in two places, I told my husband that I feel like I am disappearing; that the cancer is consuming me whole. When I look in the mirror, I see a shell; a ghost of the person I used to be. My body seems to be failing me and when I look at it, it is just a physical manifestation of all my pain …and simultaneously all my strength. I am caught in this dichotomy every time I look at myself.

I am proud of my body and everything that it has been through since childbirth and my diagnosis, but I am also reminded of all its shortcomings every time I step outside my door. As a society, we are obsessed with body image, and our definition of feminine beauty in particular has never been more troublesome to me than it is now. Most days I am able to shrug off my own insecurities of what others may think when they look at me. Some days, however, I just don’t have the words to express what I am going through. I therefore reached out to a friend to help me tell my story through photographs.

 

If a picture is worth a thousand words, I hope you’re wearing your reading glasses, because I have a lot to say. I haven’t really opened up too much about my mastectomy and I think it is finally time. I have found the experience to be deeply empowering, but I also need to be honest and vent some of my frustrations.

 

 

Here’s the thing everyone needs to understand about those undergoing a mastectomy – we are not in it for the “boob job!” I am all for making light of a bad situation, but it is insensitive and ignorant to assume that everyone undergoing a mastectomy will choose reconstruction or that the reconstruction will even come close to replacing what a woman has lost. For me, I will never breastfeed again—cancer took that away from me only a few short months postpartum with my first child. A “boob job” cannot fix that.

The morning of my surgery, my husband brought my son into our bedroom, and I nursed him for the last time. I remember looking down at him on my breast, and feeling a sense of calm and peace. I knew that I was making the right decision for all of us. The days leading up to the surgery though were a mixed bag. At work I would go into the closet sized space that they designated as my pumping room and more often than not, I would cry. The room was on the back wall of my company’s call center, so I could hear all the hustle and bustle- people going about their normal daily activities- while I was struggling to cope with the reality that I would be irrevocably transformed by the upcoming procedure.

I’m not sure if it was the size/location of the room, the guilt I felt being there instead of with my son, or the absurdity of being hooked up to a machine by my breasts while weeping big, fat, ugly tears, but I had never felt more isolated.

I mourned the loss of my breasts because I had finally had the privilege of using them to nurture another human being. As I’ve mentioned before, breastfeeding came naturally to me, and I felt robbed. I have yet to be robbed of my sense of humor though, and I got through the surgery the same way I get through today - by making jokes with my husband. The biggest one ended up being the title of this blog…as a nursing woman losing my breasts, you could say it was “spilled milk.” I accepted my situation and told my husband there was “no use crying over it.” Instead, I chose to embrace it. 

 

I decided to bare all, as a means to heal myself and also to educate others.

This is what breast cancer looks like.  

 

I choose to have a bilateral mastectomy (meaning both breasts) even though my cancer was only in the left breast. This decision seemed like a no brainer when I learned that I tested positive for the BRCA1 gene mutation. This gene put me at a higher risk for breast cancer, breast cancer recurrence, and the development of ovarian cancer. Simply put, at the time, I thought if I didn’t have breasts I’d be in a better position to never have cancer again.

For the procedure, I had two surgeons – a general surgeon to perform the mastectomy and a plastic surgeon to begin the reconstruction. What most people don’t realize is that breast reconstruction is a gradual process. During the mastectomy, the surgeon removes all of the breast tissue and, at least in my case, the nipples. The plastic surgeon then comes in behind her, to begin the reconstruction, and is only able to work with what the first surgeon leaves behind. This is one of the many reasons why breast reconstruction after mastectomy is not the same as breast augmentation (aka a boob job).  I did not get to choose the size or shape of my new breasts. We had to build them from scratch.

For my reconstruction, the surgeon recommended tissue expanders. These hard plastic balloons are inflated, over time, to rebuild the chest wall and form a cavity for an implant (the expander is later swapped out for the implant during what is called an “exchange surgery”). It does not hurt, but it is not comfortable. Every day I am very much aware of the foreign object under my skin. Every night I struggle to find a decent sleeping position. 

After only three expansions, my plastic surgeon and I agreed that I was done. The skin on my left side, where the tumor was, is pretty thin and we did not want to risk tearing. I will be able to have my exchange surgery most likely early fall. As much as I am looking forward to getting the expanders out and hopefully feeling (and sleeping) normal again, I do not have any sensation in either breast. So they’re just…there. If I had to do it all over again, I still would have removed my breasts, but actually would have passed on reconstruction altogether. I might still decide not to go through with the exchange surgery. In the grand scheme of things, my chest does not matter to me. I have more important things to worry about…the tumors in my liver…the fractured vertebrae in my spine…my son and my husband... my family and my friends. For the most part, I am comfortable and confident in the skin I am in, but it’s only skin.  

I have come to find that, metaphorically, my skin is a lot thicker than I once thought. Still, I find the need to remind others to please stop making the boob job jokes, or telling women who are facing a mastectomy that they are somehow lucky to be getting new boobs. I was perfectly content with my former breasts just the way they were. I will be content with what my plastic surgeon is able to construct for me. My breasts never have and never will define me. And yet, I am not the same. I will never be the same. While I can see what is happening to me physically, the mental ramifications have taken longer to reach the surface.

 

Every time I look in the mirror, I take a few deep breaths, and I tell myself that I am not my body. I am not what happens to me. The parts that truly make me "me" are still intact. So while I might not always recognize the person staring back, I know that she is resilient. She is a fighter and she is a survivor.

 

Photographs courtesy of Jason Shaffer Photography.

 

For additional information and breast cancer awareness please "like" and follow Jenny B. vs Breast Cancer on Facebook at www.facebook.com/JBvsBC. 

 

To make a donation in support of Jen and her family, please visit www.gofundme.com/JBvsBC.