Grief in Survival: Beating Breast Cancer (ft. Nichole Wenderlich Owens)
Everyone experiences breasts differently, namely those whose breasts try to kill them.
Puberty sucks.
Genius entertainer Eddie Izzard explains it best in her late 1990s special Dressed to Kill. All sorts of weird shit starts happening to your body. Voices change. Hair starts appearing in places that it no longer needs to thanks to the advent of clothing. Your brain devolves into a pile of oatmeal and then reassembles itself into something that functions better, in theory.
And, look, I’m speaking as a cisgender male that is a husband and father of two daughters, one of whom is 14. I didn’t go through any of the shit that my wife went through, my oldest daughter is going through, and my youngest is going to experience. I give women all the credit in the world for being the stronger sex. You all go through a biological process that requires monthly maintenance that would crush nearly every man if it happened to them. You carry children and give birth to them. You let them feed off you. And, then, in a feat of amazing strength, you let them go.
I, on the other hand, used to get grossed out at the mere mention of the phrase “pap smear,” a procedure that I’ll never experience.
So, I salute you for all of this.
And, I nod my head in recognition that your body, namely your breasts, could betray you.
Breasts are a delicate subject. For girls, they are either greatly anticipated or reviled, for their size, shape, when they begin growing or any number of 1,000 other reasons that I don’t begin to pretend to know. For boys of a certain age, well, actually most ages, they are objects of…let’s say observation and discussion. In short, breasts are a topic that men and women have on their minds frequently but always for different reasons.
All of that said, everyone experiences breasts differently including those of us who got a front row seat while a loved one’s breasts try to kill them.
My aunt Marietta developed breast cancer in the mid-1980s. I was old enough to know she had cancer, but young enough where my sister and I were largely kept away from her during this time. She had a radical mastectomy — a procedure where all of the breast tissue, deep into the chest, is removed as well as the lymph nodes — which was pretty common during the time period. It was caught early and her treatment was successful at keeping her healthy and alive.
My aunt and I would regularly have lengthy philosophical chats about everything and nothing. One day, in my 20s, I asked her if she felt like something was missing from her after she had cancer and her breasts removed. She said that she had never thought about it before I asked her, and she didn’t know how to answer. She was sick, she followed her doctor’s advice, and she got better. In the moment, survival was her priority.
October is National Breast Cancer Awareness Month1. In commemoration of this month, I didn’t want to just write about it or the short- and long-term emotional impacts. I wanted to get into the journey and grief experienced by someone when their body — their breasts — decided to turn their lives sideways.
A Dirt Nap Essay by Nichole Wenderlich Owens
Ed. Note: I’ve known Nichole for the better part of 20 years, as we were involved in some community projects and both work in the same industry. I was in the cheering section on social media as Nichole fought back against breast cancer. She graciously and bravely agreed to share her story with you.
When I was diagnosed with breast cancer almost eight years ago at age 36, all I wanted to do was hold my son. He was two at the time. I remember coming home after visiting my doctor and lying on his floor while he took a nap in his crib. Shadows of jungle animals danced on the walls from his mobile as I stared at his beautiful face with a new ache in my heart.
Because I didn’t yet know my prognosis (you typically learn your cancer stage when a lymph node biopsy is performed at the time of tumor removal) my head swam with “what-ifs.” All I could do was worry.
From the day I was diagnosed to the day of my surgery, it was only one month. In clinical terms, this met the standard of care. In personal terms, I had 30 days of anxiety where I didn’t know if my cancer had spread or how much time I had. I was binging junk food like a champ to quiet the voices in my head that spun out into worst-case scenarios and battled the ever-present twitching of my left eye.
My story, unfortunately, is similar to too many others. I had pain from an issue with breast feeding for which I had a mammogram, “just in case,” which was clear. Six months later, I found a lump myself. It was right next to my nipple on my left breast and was so big that you could literally see it with the naked eye.
My husband joked that it was a spider bite, and I shrugged it off that he was probably right. Besides, I was young and healthy. I had no history of breast cancer. It was a week or so later that I showed my sister who urged me to see a doctor.
The mammogram showed a mass but because I had dense breast tissue, it was inconclusive. (Nichole’s note: As an aside, the FDA just approved the Mammography Quality Standards Act, which requires women to be notified after a mammogram if they have dense breasts because it can impact a breast cancer diagnosis.)
I immediately had an ultrasound, which is where things got real. The technician left the room to get the doctor because she saw blood flow coming to the mass, which she told me could indicate cancer. The radiologist scheduled me for a biopsy later that week.
My biopsy was on a Friday and I had to wait the entire weekend for news. On Monday morning, December 12, 2016, I got the call that I had cancer just as I was starting my day. In shock, I called my husband and went to my doctor where we discussed options. I also got a blood test that would later tell me I did not have the BRCA gene mutation.
I chose to meet with my entire care team in one day — a surgeon, plastic surgeon, a radiation oncologist and oncologist. To say it was overwhelming was an understatement.
In a tiny exam room, I had my parents and husband lined up in chairs on one side of the room. Separating us was a curtain. On the other side of the room was an exam table, where I sat along with normal diagnosis equipment you’d find in a doctor's office: scale, blood pressure monitor, etc. As each new doctor came in the room, I felt on display (I literally was, as each one had to examine my tumor).
As each doctor shared their part of the treatment plan, I saw the pain and worry reflected back to me in the eyes of the people who loved me the most.
I tried to be strong and play it off that it was not a big deal. I tried to cope with humor. When they took my blood pressure, it was 159/90. I obviously couldn’t hide the fact that I was nervous.
They told me the first step for me was surgery. I could have either a lumpectomy, which would require radiation, or a mastectomy or double mastectomy. Because of the location of the tumor, regardless of surgical option I chose, I would lose my left nipple to ensure clear margins. I told my surgeon that it wasn’t fair he was taking the only one that worked.
If I chose a mastectomy or double mastectomy, I was presented with the options of implants.
Then, I met the radiation oncologist, who said I would only need radiation if I chose a lumpectomy. The upside of this choice was less surgery. The downside? A long treatment process and loss of skin elasticity, which could make reconstruction more challenging. I zoned out when the oncologist started talking. I couldn’t process the thought of chemotherapy yet.
Because I had preexisting breast pain, I opted for a double mastectomy. This was the most aggressive surgical option, but it would remove my nerves (bye, bye breast pain!) and the aggressiveness of it gave me peace of mind. To move this option forward, I met with my plastic surgeon to discuss the reconstruction.
He brought in what looked like a suitcase, which was full of implants. As I held the silicone implants and listened to him explain that his goal was to make me look as “normal as possible with clothes on,” I felt lightheaded and sick to my stomach.
It all hit me hard right then. I was overwhelmed by the irreversible choices I had to make and the journey I was forced to be on. I was sad I was losing my breasts, my nipple, and feeling to the entire area. I was angry about the process I had to go through which took me away from work, family life, and activities I enjoyed. I became obsessed with scrolling through Pinterest to find breast tattoo options, even though I’ve never had a tattoo in my life.
As a type A personality, it was extremely hard to not have all the steps of this journey figured out. The loss of control was terrifying. When I made my decision and booked the double mastectomy, I finally felt some peace. I was taking actionable steps to become cancer free.
When I woke up from surgery, they told me my lymph nodes were clear and the cancer had not spread (best news EVER!). My official diagnosis was stage 1a, ER/PR+, HER2- invasive ductal carcinoma. Apparently, as I was coming out of anesthesia, I shared the news with multiple nurses that my cancer didn’t spread! I was that ecstatic.
I now had hard plastic mounds, called expanders, in my chest. After the double mastectomy, my plastic surgeon had put them under my pectoral muscles and I was told that over the next few months, I would get them slowly “filled” to stretch out the muscle. This would allow implants to go into the new spaces created.
Because my cancer was “node negative, hormone positive,” I qualified for a genetic test of the tumor itself called an Oncotype Dx. This fancy schmancy test would tell me my risk of recurrence and if chemotherapy would benefit me in lowering this rate.
Here’s where it gets confusing: My cancer hadn’t spread. I thought I was good.
Nope.
My tumor was a shit head grade 3 son of a bitch, which meant it was highly aggressive and had the most potential to spread. Although they scooped out all of my breast tissue, apparently tiny particles could have theoretically still existed, and if they wanted to, could gang up and move to other areas of my body. The doctors told me this would mean a “distant” reoccurrence or metastases.
Pair that with this Oncotype score I received, which was a big, fat 21. What did that mean? Anything under a score of 18 and they knew chemotherapy would not benefit you. Anything above 31 and it definitely would. The numbers in between was a gray area where they were not sure of the benefit.
Perfect.
I now had to pay attention to the option of chemotherapy. I had ignored it before because I didn’t think I’d need it, and truthfully, I couldn’t deal with it. My worst fears were coming true. All I could think about were stereotypical images of frail, bald women in scarfs. Not to mention the fact that having chemotherapy was literally injecting poison into your body.
My first oncologist wanted to go hardcore with a strong cocktail of chemo that would ravage my immune system, and come with a host of side effects and potentially cause long-term damage.
“Get it all because you are young,” she said.
She spoke in medical jargon with a heavy accent and I couldn’t understand either. My head spun as I rationalized that I was only stage 1. I was overwhelmed, confused and scared. Needless to say, I sought a second opinion.
My husband was no help. He wouldn’t weigh in. He said it was my decision and I had to be comfortable with it. To this day, I do not understand how he had so much restraint. Maybe he was freaking out inside, but he acted like this was just a bump in the road and soon everything would go back to normal.
Sometimes I felt like that too. I never really thought this would kill me. Of course, my thoughts sometimes spiraled to visualizing my own funeral. Sometimes I’d find myself crying as I thought about who would sing lullabies to my son if I was not there. Sometimes I even thought that cancer was karma for being an asshole earlier in life. But deep down, I knew I would get through this.
Enter the oncologist I chose. He explained that he wasn’t sure if I needed chemotherapy. He agreed, I was only stage 1 and it may be overkill. But then he said, it comes down to this:
“If your cancer were to come back, I could treat you, but I couldn’t cure you.”
Those words still haunt me. I pulled the trigger right then and there. We were doing this thing.
Chemotherapy was no fun, but it was over quickly and I moved on. Next, came my “exchange surgery” to replace the expanders in my chest with implants.
The implants were nothing but trouble from the start. They were painful, cold, and eventually rolled into my armpits. For me, it was a long road with three revision surgeries to try and fix these issues. Despite all this, they never felt quite right.
Next up was Tamoxifin, or hormone suppression therapy, which I had to take because my cancer was estrogen (ER) and progesterone (PR) positive. This phase lasted for seven years and came with a whole host of side effects you’d imagine you would get if you were chemically blocking your body from receiving estrogen.
During those years, I did a lot of research to find ways to reduce my side effects. I saw a neuropathic oncologist who suggested a bunch of herbs and vitamins that could compliment my treatment. I took them religiously. I also did a lot of whining.
The further out from diagnosis I got, the more normalized my journey seemed to me. I learned more clinically and, maybe more importantly, I learned to ask more questions. I started to become my own advocate and I try and help others learn to advocate for themselves.
During this time, I learned of an option to replace implants with my own body tissue. The surgery was called a DIEP flap procedure where they took blood vessels, fat and skin from my lower abdomen to create “flaps” which become reconstructed breasts. Even through this was a massive surgery where you end up with a scar from hip to hip and you have to stay in the ICU for two days, I went for it. I was ecstatic to use my own body tissue and get rid of the implants. It was a two-phase process, but today I’m so happy I took the additional step. I only wish I would have known about this option from the get-go.
This July, I took my last Tamoxifen pill. With that, I finished active treatment. Although I’ve always called myself a survivor, just this summer I officially entered the phase of my patient journey called “survivorship” almost eight years after diagnosis.
And now, is it back to normal? Obviously, I’ll always be changed. It’s impacted who I am today, how I view the world, and how I choose to spend my time.
My view on the experience has also changed over the years. While at first I certainly faced the stages of grief including denial, bargaining and anger, today, I’ve accepted the experience. Sometimes I even think, I’m thankful for my journey. In many ways, it has improved me as a person and shone a light on what just may be my life’s purpose.
Final Thoughts on Finality
Dirt Nap is the Substack newsletter about death, grief and dying that is written and edited by Jared Paventi. It’s published every Friday morning. Dirt Nap is free and we simply ask that you subscribe and/or share with others.
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An aside for people who know me well. You’re probably wondering, “Jared is promoting Breast Cancer Awareness Month? After all of those years railing about how the “go pink” movement was a sham?” Yes. I still think that the pinkification of everything is a marketing ploy that doesn’t always support what you think it does, but the impact of the disease is real, the burden is large and there are interventions and preventative measures available.
People affected by breast cancer should get every resource in the world to support their care, treatment, recovery, and coping. Companies and organizations that prey on people by bastardizing pink to make money should be called out. That’s always been my point.
Now back to our original program.
Thank you for your beautifully written post. I am struck by the amazing details that parallel my own story with Breast Cancer. I am a 16 year survivor, stage 3 ( I can't even remember the full diagnosis) decided on a single breast mastectomy but those early decisions I made impact my life every day. It's so unfair how things have to play out. Dr.'s try but they really can't help you wrap your head around everything that is happening to you in that moment and how it will extrapolate out years later. Your post brought me back to that time, obsessing about Chemo therapy and losing my hair, which was really the least of my problems, right! Thank you for sharing and helping me reflect on what Cancer Awareness month means to me now.
Wow, cancer comes with its own vocabulary. Thank you for sharing your journey.