Mommy Mode

Today starts week two of not being able to hold my son. I can “see the light at the end of the tunnel,” and yet my entire being aches for those baby snuggles! Last week, I moved forward with my breast reconstruction. Those annoying tissue expanders came out, and I got my squishy implants. The pain has been very minimal, especially compared to recovery post mastectomy. Still, I am not permitted to lift anything over 5 pounds. My son, the tank, being one of those heftier things.

I debated making this blog post about the reconstruction surgery to educate folks on how it is different than augmentation and how it has affected me, but instead I need to shift focus from the cancer and all the treatment and surgery and kick it into mommy mode. I’ve been talking to a lot of my fellow moms recently and I have some insight to share. A few “ah-ha” moments, if you will.

Most mothers cringe when they hear that I can’t hold my baby boy. I shrug it off, explaining that it’s only temporary, and then they proceed to tell me how strong I am. Which I also shrug off because honestly, I don’t know how to respond. This weekend though, it dawned on me that I don’t know how to respond to a fellow a mother who tells me how strong I am, because I do not see myself as any stronger or braver than she. As moms, we endure any/all things for our children. Isn’t that the epitome of strength?

In regards to not being able to hold my son, I think the sadness comes in knowing that our snuggly days are limited. Eventually, he will not want to be held. As patient as I try to be, I know that this phase will be over too soon. Cancer or no, I think that is something all moms can relate to. I have several mommy friends who shared that their babies never really wanted to snuggle, or that as soon as they started sitting/crawling/standing they were constantly on the go and no longer wanted/needed the safety of mommy’s arms. We simultaneously cherish and lament these milestones!

When my little guy started pulling himself up more, I knew it was time to lower the crib mattress and remove the mobile. My husband and I were very casual about it, and he set the mobile aside with the rest of the things that the baby had outgrown. The following day I was tidying up the nursery when suddenly the pile of stuff hit me like a tidal wave. He’ll never again be that small… I’ll never have another child that small… I’ll never have another child. I had hoped to be one of those moms bitching about an over accumulation of baby stuff in storage for “when the next one comes,” but instead, looking at all the stuff set aside that needed to be dealt with, I finally had to accept reality (or what felt like accepting defeat) and admit to myself that it was time to donate this stuff and keep moving forward.

I picked the mobile up off the pile and, standing in the middle of the room, in an empty house, in what felt like an empty universe, wailed like a fucking banshee (sidebar…I told myself I would try to avoid cursing in my blogposts and work on a better vernacular, but really, in describing that moment, nothing is more accurate or satisfying than the “F word.” Plus, I did just follow it up with “vernacular” so that probably counts for something).

I wailed and I screamed, tears streaming down my face, until I collapsed into a soggy puddle on the floor. My dog, Tukus the WonderPuggle, charged into the room and began licking my cheeks. Moments prior, he hid on the stairwell with his ears low, not sure what to make of my raucous outburst.

And then, just like that, I started laughing. How ridiculous must I look, I thought. And yet, I know I am not the first or the last mom to ever have such a break down. Every emotion just comes so much easier, so much more intense for me. At first, I attributed this to my hormone therapy. While I am sure that’s a contributing factor, I believe that the raw vulnerability (and intense strength you can achieve from being so real) came several months back when my son was born and just continues to grow as he grows. This is not limited to a mother with cancer, but something I am willing to bet all moms experience.

Just the other night I was having dinner with a close friend who recently went back to work after maternity leave. We talked about the trauma of childbirth and how it stays with you long after the physical wounds have healed. With the cancer diagnosis postpartum, I went on to wreck additional havoc on my body, but I knew that she could relate to a lot of the same feelings from that one shared experience. We were talking about the physical changes and also how stress can really affect a nursing woman in particular, when suddenly her voice caught, and I knew what she was going to say before she did. My heart broke for her, and all I could do was hug her and tell her, “I know.” Sometimes our bodies just betray us.

I made some joke about how postpartum depression is actually more like post-traumatic stress, but really, I wasn’t joking at all. And I could tell that she wasn’t either. Tears started to well up in her eyes again as she spoke about the transition going back to work, how everything is the same and yet, she is not the same. Cancer patients talk about this a lot too; some like to call it the “new normal,” but there’s nothing “normal” about what we go through and the constant heightened anxiety that we live with. I think moms also get a taste of this, I really do. With my stage IV diagnosis, I have a very heightened sense of my own mortality, but I also fear for my son like other mothers do for their children. We have to be ever vigilant, on constant guard. It’s fear, but fear that comes from such an intense place of love.

Yesterday, yet another one of my mommy friends and I were talking about how nice it is when they start sleeping through the night. And then she told me that she still doesn’t ever get a full night’s sleep because she periodically needs to checks in on her son, just to make sure he is breathing. And I smiled and said, “I know.” I do the same thing.

Will that ever go away? I’m not sure that it does, but I am sure that it’s all worth it. With a smile on her face, she started to tear up and to tell me how strong I am and how she can’t imagine what this must be like. And that’s when it hit me, and I told her, “Sure you can. I am strong because I have to be strong… you’re a mom, so you know.”

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.

Time is Fleeting

The very first book I read on the subject of breast cancer was a memoir in which the author talks about her year after diagnosis as a “wash.” She said it didn’t count. This was her way of accepting her diagnosis and everything that comes with it; the endless scans, bloodwork, doctor’s appointments, surgeries. I tried to look at this year like that, but I knew I couldn’t.

How could I when this was the same year that my son was born? As a new mom with a stage IV diagnosis, it’s hard to be so dismissive of my time. This year cannot be a wash because this might be the only year I have left. With that kind of thinking comes this extreme pressure to live every single moment to the fullest, but what the hell does that really even mean!? And how the hell do I plan ahead for my family's future when mine is so uncertain.

Lately it’s taken everything in me to try to be mindful of the present and just take one day at a time. I have this persistent anxiety over what I should or should not be doing, and sometimes it’s crippling. Just this past weekend, I flipped out over a slight detour, feeling that the half hour I was off course was wasted time; time that I will never get back. I got so angry and frustrated that I lashed out at my husband. And then I realized that my reaction was all wrong and that I was the only one responsible for putting myself in such a bad mood. I was quick to apologize, he was quick to forgive. That’s how we get through this together; quick to apologize and quick to forgive so that we can move on and continue to enjoy what we can.

My husband is an extremely patient and generous man. I am thankful for him and our strong relationship every single day. Simultaneously, I am also afraid for him. What will my death do to him and how will he cope as a single parent to our young son? It’s a very real concern and yet no one wants to talk about it. Instead people keep telling me to stay positive and “keep fighting.” Can I share a secret with you? As grateful as I am for the daily support and outpourings of love and encouragement, I am so discouraged when I hear things like “you will beat cancer!” Because the truth is, no, no I won’t. Death is a fact of life and metastatic disease pretty much guarantees that it will come sooner than expected. So when I die, does that mean that I just didn’t fight hard enough? Will I be pegged as a victim rather than a survivor?

We use all these war metaphors and slap a pretty pink ribbon on just about anything and say that we’re raising awareness and “fighting” for the cause. But I’m tired of all the metaphors. I’m even more tired of the rhetoric around early detection…especially those idiots (yeah, I’m going to call people names now) who shout things like “save the ta-tas” to someone who has already undergone a mastectomy and therefore did not get to save her ta tas. This drivel does nothing to further research for those of us already diagnosed, suffering through treatment, facing advanced disease.

Despite the ubiquitous pink ribbon, 20% to 30% of people initially diagnosed with early stage disease will develop metastatic breast cancer. The cancer that kills. Yes, we have made some serious strides in breast cancer research and thus treatment options. In the 70s the average survival after a mets diagnosis was only 18 months. Today, the median survival is three years. Call me greedy, but I want more! I want longevity but I also want a sustainable quality of life. I want to grow old with my husband. I want to raise our son together.  Is that really so much to ask for?

The Stones probably said (sang) it best, you can’t always get what you want. Here’s hoping that my mets sisters and I can get what we need…. I implore you to please get involved in a way that can make a real difference. Do some research to know what your dollars go toward when you buy something marketed with a pink ribbon, or better yet, read up on MetaVivor and make a donation that will matter: www.metavivor.org. 

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

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.

  

 

The Medium is the Message

When I was pregnant with Frankie, I wanted to be as prepared as possible. So, naturally, I started consuming everything that I could about how to be a good mommy. I read a couple books, you know the ones – “What to Expect When You’re Expecting” and such, but for the most part, I fled to message boards and a slew of online baby sites…all from the convenience of my iPhone. After Frank was born, I continued to reach for my phone to consult the world wide web on whether I was feeding him enough or whether I had the temperature in his nursery right, if he sniffled could he be coming down with some strange illness!? I realize that all of this is normal, but I got to the point where I finally had to put the phone down and just stop already! I realized that I needed to learn from him, not some random website. While there certainly is a lot of information to be gleaned from such resources, there is no substitute for human interaction. I began taking my cues from him and we’ve been a better pair because of it. As questions arose, I found it much more beneficial to meet with our pediatrician (you know, the real baby experts) and stare in the whites of her eyes rather than strain my own against some bright LED screen.

And then came my cancer diagnosis. I again jumped online, with just a swipe of my finger across my phone’s screen, consuming as much as I could to try to make heads or tails of my pathology reports, prognosis, etc. The problem though, is that every time I reached for my phone, Frankie did too. He is already obsessed with finding out what this gadget does and has even taken a few baby selfies. At first I will admit, it cracked me up. But then I realized, again, that it was time to put the damn phone down. What exactly was I teaching him here? I never wanted my phone to become a toy. I really do understand parents who let their kids play with it, but for me, I was pained by the sudden awareness of just how much time I was wasting on this silly device rather than spending time with him. Time that I now know is limited and therefore precious.

Yesterday I had my follow up CT scan to see how the tumors in my liver are responding to the chemotherapy. For those who don’t know, when you have a CT scan you are required to drink a sizable container of barium sulfate which is a contrast solution to help light up your organs, making them easier to see on the scan. After drinking it, you wait for 45 minutes. Normally, I would be one to reach for my phone and, as I’ve spent a lot of time in waiting rooms recently, I can assure you this is the norm for most people. Yesterday, however, I challenged myself to keep my phone in my purse. And just like that, I become more approachable to others. I ended up having a very nice conversation with an elderly couple. You could tell within an instant that they had a tremendous amount of love and respect for one another. I was especially impressed with the woman who, despite sharing sad news about her husband of many years, kept a smile on her face the entire time. She talked about caring for her husband and how she saw him through his fight with cancer. I held my husband’s hand a little tighter – my caregiver seeing me through so much already too. I told him later on the drive home, that I want to be like this woman. That I want to grow old together and take care of each other and that no matter what our situation, we will continue to hold hands and smile in the face of anything.

This couple gave me so much confidence in myself and in my marriage, and yet they were total strangers. Had I been on my phone, I would have missed this gift completely. Anywhere you go, look around. I guarantee you will see a large number of people giving their phones more attention than the people they are with. This isn’t some great revelation; it’s who we’ve become as a society. We have unlimited information at our disposal, and yet when you get down to it, all of it is garbage compared to what’s right in front of us. We spend so much time on our smart phones that we’ve become a herd of dumb people. We retreat to social media but ironically we’ve become anything but social. It’s actually extremely isolating. If I had my phone out, I guarantee that I would not have benefited even half as much as I did in talking to that couple.

This post is not intended to tell you how to live your life, but if I can make one tiny suggestion, for God’s sake, don’t spend it glued to a screen. Put the phone away and look people in the eye. Have a genuine interaction. Nothing is more important than the people sitting next to you, dying to have a moment of your time.  

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.

Finding the Words, Finding My Truth

 “Cultivate the habit of being grateful for every good thing that comes to you, and to give thanks continuously. And because all things have contributed to your advancement, you should include all things in your gratitude.”

–Ralph Waldo Emerson

The good, the bad, and the ugly are all a part of what inspire me to share my story, as they are all part of my understanding and advancement through this experience. I consider myself critical, not skeptical, and I am able to apply the same lens to this situation as I had to apply during my pregnancy. That is, to smile and thank others for their advice and comments, take what makes sense for me and leave the rest behind. No use wasting precious time and energy getting upset over silly comments and bad advice. Instead, I try to be grateful for any/all interactions that I have with others, and use even the most awkward conversations as a means to help spread awareness.

This is not another blog post about “what not to say” to someone with cancer. It seems no matter how much a thing can seem common-sense to one person, it’s fair game to the next. I have always been a huge fan of the old adage “if you can’t say something nice, don’t say anything at all.” However, with cancer, I think the worst thing a person can do is go silent. Being honest and telling the patient, “I don’t know what to say,” is preferable to disappearing altogether. I've thus come to accept that while there certainly are better ways to approach various topics, I must continue to strive to have patience with others and with myself when talking through the tough stuff.

Still, as much as breast cancer is in the public eye, there are many persistent misconceptions that I routinely encounter. For example, just the other day as I was walking my baby, I started chit-chatting with the neighbor ladies. One of them said “Thank God it’s breast cancer! Of all the cancers to have, that’s the easiest. They know so much more about it now so it’s easier to cure.”  Another neighbor then added, “Plus, it’s so good they caught yours early. You’ll be done soon, right?”

I had to take pause for several moments before I could respond. How could I possibly explain to someone (seemingly) untouched by the “c” word that no cancer is “easy?” Furthermore, I hadn't disclosed anything else about my cancer or treatment so how did we jump to my cure already?

Let’s talk about the “easy” part first, or rather, how cancer is the farthest thing from easy! The moment someone receives a cancer diagnosis, their entire concept of reality is shifted, perhaps even shattered. For me, I received the news with my husband at my side. We looked at each other, and then we looked at our 3 month old son. There just aren’t enough words to express the feelings of fear, doubt, and loss that can be all consuming in those tiny spaces of silence. I think that people often forget that cancer isn't just about “fighting the good fight” through medical treatment; it’s also a daily internal struggle. All of it requires vast lifestyle changes, many of which can be immediate. It’s a complete and utter shock both physically and emotionally. So much has happened to me in such a relatively short amount of time that I know I haven’t even begun to process it all. I find it a little disheartening at times that people hear breast cancer and jump right away to the conclusion that since so many women have or have had it, it must be “easy.”

I think the larger issue here is that breast cancer awareness and research has garnered so much attention in the media that unfortunately a dangerous precedent has emerged in the public mind: early detection leads to cure. So it’s no wonder that to the layman, anyone with breast cancer will simply go about their battle and be “done.” This is problematic for many reasons. Most importantly, let’s all take a moment to remember that there is no cure for cancer. I hope that I will be among those fortunate enough to hear the word “remission,” but for anyone with cancer, there is always the threat that it could come back. Remission is not the same thing as “cancer free.” In fact, people who have had cancer are never truly “cancer free,”…the correct clinical term is “cancer not found.” And that can change in an instant. It is always a lingering threat, and is a grave burden for the individual. The promise of tomorrow is a lie, and no one knows that better than a cancer patient.

What is true, however, is that early detection can lead to higher survival rates. Catching the cancer before it spreads is key. In my case, I went from a stage II diagnosis (invasive breast cancer spread to my lymph nodes) to stage IV (breast cancer metastasized to my liver) in only two months’ time. When I stopped to speak to my neighbors, I had received this updated diagnosis just a few weeks prior. The honest short answer I wanted to give them is that they absolutely did not catch mine early, and that I will not be “done” until I am dead. Doesn't make for polite conversation though, does it? Instead I smiled, and thanked my neighbors for their kind words of reassurance. I explained that no, I won’t be done anytime soon and that while my cancer is aggressive, I have hope that I will one day wear the “survivor” badge proudly. 

Even as I said the words, I felt some pings of resentment. Traditionally, the definition of “cancer survivor” is also placed within a clinical framework as someone who has completed treatment and is free of any sign of the disease for five years. In that moment with my neighbors, I allowed fear and doubt to enter my mind. I would be lying if I said I wasn't frustrated by their naïve questions and being put on the spot like that because honestly, I’m not sure if I even have five years. After taking the time to reflect, however, I remind myself that misguided though the questions and comments may be, they are usually fueled by optimism and curiosity. Since that conversation, I have accepted an alternative to the clinical definition; I know that every day I wake, I am a survivor. I pray for patience, with myself and with others, and I pray for grace to continue to find gratitude in all things each and every day.

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.

Beyond the Bow

When you think of breast cancer, you can't help but think of the pretty pink bow and flowery messages of bravery. I am not brave. I am a mom. The choices I have had to make thus far in my fight against cancer really weren't choices at all. They were sacrifices. That’s what we do as mothers, we sacrifice. When I was diagnosed with stage IV breast cancer and the BRCA1 gene, I did not choose an aggressive treatment plan; I needed an aggressive treatment plan. My son is not yet a year old, so it only makes sense to put my body, and potentially my quality of life, on the line to ensure his quality of life. As a new mom, how could I not?

I decided to start this blog as a way to share what I have been through, but also to raise awareness and have a candid conversation of what breast cancer looks like beyond the pink bow. Young women with breast cancer face many unique challenges. As someone who had to begin treatment postpartum, mommy-hood for me has had many unexpected twists and turns. While this initial post provides a synopsis, I envision future posts will explore certain aspects in greater detail.

Flash back to late summer 2014. I found a lump in my left breast and somehow I just knew that it was cancer. With one hand on my breast, my other hand rubbed my growing belly…my baby. I had an “easy” pregnancy and there were no signs that I was sick. But somehow, I just knew…this was the beginning of something big. I was induced after my son was a week late. I was in labor for nearly 48 hours, and after pushing for 2 ½ hours, my beautiful baby boy, Franklin, was finally here! Women don’t often discuss the trauma of birth. Maybe it’s all the chemicals flooding the brain and body that help us to forget. I still remember looking at my husband, crying and accepting defeat. I thought I was going to die, and I told him that I couldn’t do it anymore. He held my leg and said something to the extent of needing to push and that, yes, I could do it. His words aren’t important; it was his touch, his very presence that told me I could do it. I was six minutes away from being taken off to have a c-section, but instead I found the last ounce of strength I possessed and I brought my baby into the world, tearing myself apart.

Wounds heal. With the birth of my son still fresh in my mind, I never second-guessed my decision to undergo a bilateral mastectomy. I was not afraid of the physical pain. I knew I could get through the surgery because after giving birth, I knew I could do anything! Emotionally, I cannot express the feelings of loss that entered my mind leading up to the surgery when I looked down while nursing Frankie. Breast feeding is beautiful and I wish our society were more accepting of nursing anytime, anywhere. While I was devastated that I could not continue, I was also grateful for the three months that we had. Feeding my son from my breast was the most natural, nurturing act I have ever had the privilege of experiencing.

My experience in the hospital after surgery was terrible. Those details will be shared later. What I will share, however, is that despite a successful surgery, I still ended up having necrotic tissue. The skin on my left side was left pretty thin to ensure they got everything, and it ended up dying as a result of lacking blood flow. It turned black. It smelled bad. A week from my mastectomy I was back in surgery to remedy the situation and luckily all went well. The most difficult part post-surgery was not being able to hold Frank. I had two drainage tubes on either side, so a total of four tubes coming out of my body…that looked like toys to him! I was also very sore and the weight of him against my chest was too much. I knew that it would only be temporary, but being a new mom who is not able to pick up and comfort her son was excruciating. They gave me narcotics for the pain, but there was nothing I could take to find relief from the feelings of guilt and longing. Only time.

Not long after surgery, my husband and I received the full pathology report. They found my nipples “unremarkable” to which we both scoffed. I had great nipples! While the cancer hadn’t spread to my nipples, it did however spread to my lymph nodes. Initially an MRI and CT scan would come back negative for cancer in my bones or organs. The cancer markers, though, all came back showing that mine was very aggressive, and we knew that we needed to meet with an oncologist and move forward with treatment asap.

In addition to hair loss and a myriad of other unfortunate side effects, chemotherapy has a nasty habit of putting young women in a post-menopausal state. Some recover, but many are left infertile. My husband, my doctors, and I therefore discussed the option of freezing embryos before I began treatment. This involved daily shots of hormone therapy to stimulate my ovaries to produce eggs. After about two weeks of self-injections, I went into another surgery to have my eggs harvested. While they were able to retrieve 13 eggs and successfully fertilize 9, only one embryo ended up being viable. I was crushed, but there was no time to mourn. I had to get started on chemotherapy and could not delay treatment any longer.

The first round of my dose dense A/C chemo hit me like a truck. I ended up in the hospital for five days with a critically low white blood count. A repeat CT scan was ordered to check for infection, and instead found three new suspicious spots on my liver. I somehow convinced myself that it was a bad scan. I was going to beat this and be a survivor, telling people years from now during some marathon about how I had cancer. When I was wheeled in for a liver biopsy I started to have doubts. 

The procedure is guided by an ultrasound and when the tech put the wand on my body and started identifying the location of each tumor on the screen, I knew. Just like I had known when I found the lump in my breast, I knew it was more cancer. They proceeded with the biopsy amidst my full-on breakdown. I hadn’t really cried up to this point. It’s difficult to explain, but my liver biopsy was the hardest thing I have had to do in my life; I would tell my husband later that it was worse than child birth. There was no pain- they numb the area and the nurses pushed morphine so I would stop tensing up my body. But I was awake and very much aware of being stabbed in a vital organ, repeatedly. The pressure and tugging coupled with my thoughts of little Frankie without a mommy sent me over the edge. My husband was not allowed in the room, so I closed my eyes and I thought of him holding my leg when our son was born. I thought of his eyes and the reassurance behind them. I knew it would be over soon, but this time I wouldn’t be getting a baby out of the raw deal, I’d be getting more cancer, and so I sobbed uncontrollably those big, ugly tears with snot dripping down my nose as the doctor inserted the needle up under my rib cage and into my liver, repeatedly.

With the BRCA1 gene, I knew at some point I would have surgery to remove my ovaries to reduce the risk of recurrence of breast cancer as well as the development of ovarian cancer. When my diagnosis did indeed jump to stage IV, the cancer having metastasized to my liver, we knew we had to act fast and shut down the production of estrogen in my body. I found myself in surgery yet again, this time to remove both ovaries as well as my fallopian tubes. It is usually ill-advised to have surgery while undergoing chemotherapy because of the risk of infection. It was a risk I was happy to take in an effort to hopefully minimize the spreading of this cancer. The procedure was laparoscopic and the recovery period was pretty short. Still, I ended up with three more scars on my abdomen, a physical reminder that I was done making babies. After chemotherapy, I will go into surgery again to complete the hysterectomy and remove my uterus. Part of my treatment plan includes hormone therapy that has an ironic side effect of causing uterine cancer, so the surgery is the lesser of two evils. The doctors explained that at stage IV, the likelihood of ever stopping treatment to get pregnant for 9 months is slim. It could literally kill me. So I decided to trade in all my “girly bits” and the future babies I had dreamt of having, to ensure my health and to live for the baby that I do have.

When people tell me that I am brave, I appreciate the sentiment, but I do not consider myself brave. It’s a very basic, if not animalistic, instinct to protect ones young at all costs. So of course I did not hesitate to sacrifice my appearance or temporary well-being so that I could continue to look after my boy. I have literally been ripped apart, but through this experience, I have been made whole. We are all flesh and bone, and I for one have never been more comfortable in my own skin. I’ve never been more confident in the decisions I have had to make. I am not brave. I am a mom. I wear my sacrifices as scars, some that you can see, many that I pray you’ll never have to know. And I wear them all proudly.

Photo Courtesy of Love Is All You Need Photography

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