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My mom survived breast cancer. Am I next?

On average, an estimated 15.2% of new cancer cases in the United States are women who have been diagnosed with breast cancer. That means that 1 in 8 women in the United States will develop breast cancer at some point in their lifetime. 

These statistics are indicative of families, touched eternally by a cancer that is more than just a disease – it is linear. Breast cancer often weaves a thread, mangled in fate and fear, through mothers, daughters, and sisters alike. The survivors among them are the superheroes of nearly every generation of women, powering through all of the anxiety, body disfiguring surgeries or treatments, and impromptu decision-making associated with the onset of such an illness. They take this disease and nip it in the bud, almost passively, acknowledging the unforgiving weight that will forever be weighing down their bodies and minds. 

In some cases, before these women can even think about what comes next, they are sewed up, stripped, and shaved. Left without any sensation in their breast area after a mastectomy, and feeling less and less whole with every visit to the oncologist. It is hard for most women to even feel at home in their bodies anymore. 

In February of 2017, my mother sat in a bleak and claustrophobic doctor’s office for her regular mammogram visit and heard the dreadful words that every woman lives in fear of, “I think we’re going to need to take a second exam. There may be cancer.” 

There was. 

She has told me that she spent most of her life, 38 years to be exact, in terror of what was surely to come. When my mother was 17 years old, the same age that I had been when she was diagnosed, her mother passed away after a long and debilitating battle with breast cancer. Afterward, this disease became a constant threat. So, in some ways, her diagnosis was more of a relief than anything else.

For me, however, it was excruciating. I had a hard time fathoming the enormity of it. Often, I would find myself drenched in hot and burning tears, unable to put into words what I was feeling. I was incoherent and unable to be comforted. I really hated it when people tried to comfort me, too—it felt condescending. I didn’t want to need them.

But, at the same time, I wasn’t even close to being the strong person that I presented to the world. I was falling hard—and fast. Most days, I would go to school or hang out with my friends, but the entire time I felt as if there were a million knives stabbing my chest at any given moment, and I couldn’t help it. Sometimes, I even liked feeling the pain. If my mom had to suffer, then, I thought, so did I. 

Years later I’m able to articulate my thoughts a little more clearly. I was terrified, desperate, and I didn’t know where to turn. So much was happening all the time and I was grieving my old self. That is, the self that hadn’t yet felt such complete and sunken remorse. There was this urgency to do everything right. In a situation like that, there’s no room for mistakes and I was incredibly nervous that I would mess up. Or maybe I was nervous that something would mess me up. Either way, I changed a lot that year. 

Unfortunately, our story is not an uncommon one. 

A woman’s chance of developing breast cancer increases if her mother, sister, or daughter has been diagnosed. In addition, women who carry the BRCA1 and BRCA2 gene are at an increased risk of breast cancer than women who do not carry the gene. 

My mom is thankfully, and gracefully, in remission today. Her fight seemed, on the outside, to be continuous and suffocating. But, she is a survivor, bold and vivacious, in all of her glory. She has the scars and the strength to prove it, too. 

I am well aware that my risk of this disease is high. But, I am also confident that this does not mean that it is a death sentence. Regardless of being only 21 years old, I am diligent in conducting breast exams on myself at least once a month in an attempt to detect any early warning signs of breast cancer. What I search for is any abnormal lumps or changes in the breast tissue/skin. 

The good news is that with advancing technologies the survival rate of people diagnosed with breast cancer is steadily increasing, even though the number of people getting sick remains stagnant. 

Any cancer diagnosis is terrifying, but breast cancer for me feels like a self-fulfilling prophecy. I won’t be able to stop being overwhelmed by this sharp and unrelenting nervousness until it is completely out of my system. And we all know that there is only one way for that to happen. 

For now, I am trying to focus on what I am able to control. Breast cancer is certainly not one of those things. But, I am in control of my mindset. While it is important for me not to let my guard down, at some point I have to just let go and let it be. I trust that fate will run its course. 

I come from a long legacy of confident and courageous women, all beautiful and bountiful in their own right. So, it would be a disservice if I did not take their wisdom and hold onto it tightly. I mean, I watched while my own mother boldly stared her fears directly in the face. She never skipped a beat, not even for a second. Her resilience against a disease that is otherwise overbearing is nothing short of inspiring and I am so proud of her. Because of her, I am starting to think that maybe I can handle it too, that maybe I can be as brave as her, when and if the day comes. 

I am not alone in my fear, although it may seem like it sometimes. I am one of millions living and feeling these same anxieties at full volume, so I must not let it overcome me. Instead, I have to remind myself to be introspective and to keep moving forward.

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Am I allowed to use the c-word?

“It’s not cancer, but it’s kind of like cancer. It may as well be cancer.”

This is a phrase I’ve used more often than one would expect.

I had a rare blood disease, caused by a complication of juvenile rheumatoid arthritis, called Hemophagocytic lymphohistiocytosis (HLH). With this autoimmune disease, cells that are supposed to fight infections instead destroy healthy cells, rendering the body’s immune system useless. An infected bug bite once landed me in the hospital for 3 nights because the infection progressed so aggressively. Once or twice a year, I’d spend a week at a time in the hospital for fevers that may have started as a common cold but now threatened my life.

It’s not cancer, but I received chemotherapy and a bone marrow transplant.

In the summer of 2015, after years of on and off hospitalization, I met with a team of oncologists. The disease does not include any cancerous cells, but it’s similar to leukemia, as it’s a disease of the blood. According to this HLH support site, “When HLH patients are initially being worked up for a diagnosis, they often hear from their doctors to hope for leukemia because it has a higher survival rate of 80-90% while HLH has a survival rate of 30-50% at best.”

It’s fair to say I know what it’s like to be a cancer patient. I lived in the pediatric oncology ward for 5 weeks, followed by 100 days of reverse isolation at home. My hair began to fall out in clumps. I had weird bruises and discoloration all over my body. I was so weak that I couldn’t get out of bed and roll my IV pole to the bathroom, causing me to pee the bed on more than one occasion. I became so disgusted with my own body that I wouldn’t shower.

I didn’t want to see myself.

I’ve received support from cancer patients who have gone through surgeries and chemotherapy. Both online and in real life, I’ve made friends who I’ve commiserated with about the nightmare that is being sick. I have friends I keep in touch with to this day who I can discuss the lasting emotional impact of this type of health crisis with.

My friends with cancer have given me full permission to ‘play the cancer card’ whenever I need to. (Example: “Sorry, I’m late for work. I had cancer.”) To use the word cancer basically communicates the health crisis I have been through. Yet, it doesn’t quite feel right. My main reason is that there’s really no chance of me having a relapse. Technically, I’m in remission, but I’m essentially considered cured because of the chance of a relapse is so small it’s practically nonexistent.

When I say have cancer, I can only think of my friend who I lost to cancer in February.

My journey to health was fairly straightforward and my time in the hospital had an expiration date. Hers, however, did not. She never knew if she would ever be done with treatment. When she received test results, she was terrified. I had confidence that I would be okay in time, and she did not.  I’ve always felt like my use of the word “cancer” to describe my illness co-opts the phrase. Sure, it’s an easy way to shine a light on what I’ve been through, but it’s not exactly accurate.

When I think about my friend who lost her life to cancer, it feels wrong for me to use the word. It’s similar to my experience, but not quite the same.

I’ve been given the greenlight by other cancer patients and survivors to freely use the c-word. To my loved ones who supported me and sat at my bedside while I vomited during chemo, it didn’t matter what you called it. Their experience, their emotions, and their fears were essentially the same as they would’ve been if it were cancer.

So, maybe I’m just afraid of the word myself. Maybe I don’t want to use the word because it’s so heavy, scary, and intense.

Still, the word “cancer” isn’t totally accurate. Rather than describing it as cancer, I’d prefer to take the time to have an open conversation about my personal experience.

Who knows – maybe speaking out about my experience could help another HLH patient feel less alone.

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Tech Career Advice Now + Beyond

6 stages of reality when cancer bites your 30-something butt

The Doctor: “I am 99% sure you have lymphoma [cancer of the lymph nodes]. We have to do a biopsy.”

The Shock

What are you talking about? I’m only 38 years old. I’m the healthiest person I know – I eat clean, exercise… It’s just a cough!

The Denial

I’m 99% sure you’re an idiot. I’m getting a second opinion.

The Fear

What if they’re right? How soon will I die? How much will the treatment hurt?

The Anger

Why me? I give my time generously to others; I give my money generously to charity… Why the fuck am I the first of my 30-something friends to get cancer?

The Sadness

My kids… My husband… My mom… my sister… abandoning them. And the chemotherapy… they’re all going to see me struggle with pain, fatigue, and hair loss. It’s going to be so hard on all of us.

The Acceptance

Well, all I can do is put my faith in science and God and see where we end up.

The Reality

OK, so I’m sick. But that’s only part of my life. I’m also a mom, a wife and a badass boss lady. I’ve got things to do and places to be! The chemo means good days and bad – I’d say about half and half. I squeeze as much as I can into my good days.

I am extremely lucky: Hodgkin’s Lymphoma is highly treatable and my prognosis is excellent. It took me some time to be thankful enough for this, of course.

I don’t want to make light of it – the bad days are bad. The nausea is under control (great meds!) but the fatigue is debilitating. For a bubbly busy bee like myself to be confined to bed because I cannot even roll over is hard, frustrating as hell. All my bones and joints ache. Then there’s the constant headache. My bad days are not actually dispersed – they come in blocks. So if the “badness” starts on Sunday, it could continue without reprieve until Thursday. I don’t feel better after a two-hour nap: I sleep and wake up feeling like shit. Do you know how demoralizing it is to wake up exhausted? And how lonely it is, on every level?

There’s also some irony in disease – everyone around you suddenly has a fucking PhD in cancer. They know why you got it – “it’s your diet”, “it’s your stress”, “it’s the pollution”, etc. and they know how to cure it – diet, water fast, affirmations, hypnosis, etc. My coping mechanism with all this (often conflicting) noise is to say – please share the clinical trials and I will look into it.

Well-meaning people keep telling me how strong I am – for the record, I know how strong I am. I am damn strong. And the universe knows it too. No reason to keep testing me!

And then on Day 6 or so post-chemo, the clouds will suddenly part and I’ll get a burst of energy. Hallelujah! And I start buzzing around doing my thing before the cycle starts again two weeks later.

What do I do?

I’m a full-time lota things! I have two babies; I am the chapter president of Ellevate, the world’s premier businesswomen’s network; I am the creator and host of podcast When Women Win which highlights awesome female role models; I am an angel investor, author and speaker. In summary, I’m busy.

The Silver Lining

It is critical to note that everybody’s experience with cancer is unique. For me, getting sick has also been a gift. I hear the groans and I know where you’re coming from. But please hear me out!

Cancer has forced me to slow down and re-evaluate my pace of life. My 2018 hashtag is #doless. I am a positive, energetic person with a natural tendency to say yes – but I am reigning that in. Just because I have a lot of energy does not mean I have to give it all away. I have learned that time is one’s most precious commodity and I am now trying to control it unapologetically. 17 years in the corporate world taught me a lot – but not this. I have to get better at saying no.

We stumble through life thinking that death is bad and is the opposite of life. That is simply not true. Death is the natural and inevitable conclusion of life. The opposite of life is fear. I had never felt fear until I was diagnosed.

Let’s noodle that for a bit: I’ve only just realized that I’ve never before felt fear – what an awesome job my parents did! But cancer will scare you – fear of going through pain, fear of inflicting pain on others… When I let my mind go into fear it is debilitating and depressing. This is the opposite of life. I’ve decided to own my fear: I let myself indulge in morbidity for short periods of time (minutes, not hours). I then assume control and focus on gratitude –  one’s situation can always be worse. I believe that three factors have helped me manage my fear:

1) Logic: my prognosis is good. And living in fear is so upsetting it must be harmful to my recovery (end goal).

2) Faith: I have a great medical team and am doing all that can be done. My life is divinely guided and I am always going in the best direction.

3) Optimism: I like feeling good!

When you lose your hair, it’s not just the from your head or face – no bikini wax necessary! Smooth as silk for months! Cancer patients also get free valet parking at hospitals – don’t knock the small wins!

The big one is kindness. I’ve been blown away by how wonderful the people around me have been. Even acquaintances I haven’t seen for years… Friends have been incredibly supportive by doing, not just talking. Although it seems all the love stops at IKEA’s door – I STILL can’t get anyone to go there for me!

Seriously though, the kindness has been humbling. And, it makes me wonder what a beautiful world it would be if we treated everyone like they were sick. Unlike cancer, kindness is contagious.

So…

I’m two-thirds of the way through my chemotherapy plan and have already learned a ton about life, about myself and about others. I have a new belief now: there is always something to feel thankful for.

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