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. 

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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

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.