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Living with metastatic breast cancer (MBC) can sometimes trick me into believing that my life is now essentially little more than a series of medical tests and treatments. It can feel like my identity begins and ends with cancer.

Before breast cancer, I was in graduate school and working towards a career as an equine veterinarian. I had goals. I have always thrived in the academic and career worlds—I like pressure, deadlines, working hard, and feeling accomplished.

When I started chemotherapy, I had to leave veterinary school. Even though I later went into remission, I knew that vet school would no longer work for me, so I worked hard to build a freelance medical writing and editing business instead. I felt fulfilled and proud of the business that I built. When I became stage 4, I scaled back my client load but continued to work, determined not to let go of this part of my life. When the cancer spread to my brain, my days in the work force officially ended.

I no longer have the energy to study or work. My days are now scheduled around doctors’ appointments, my weeks around infusions, my months around PET/CT scans. The word “terminal” is never far from my mind; I exist with an expected expiration date that makes long-term plans difficult at best. My primary goal is now to get through each day. My purpose in life is to survive.

In truth, I struggle with feeling fulfilled in such an existence.

Then I began to write about my experiences as a 25-year-old breast cancer patient. It started as a cathartic exercise and slowly turned into something more. I joined writing groups and built a website. I began to feel a sense of accomplishment through my writing that I had not felt since my pre-cancer life.

My writing took an exciting turn about a year and a half ago when I received an email from filmmaker and director Kerith Lemon proposing that we turn one of my short stories into a short film, bare. I enthusiastically agreed. We hoped to create something that would feel empowering for the breast cancer community, to show an honest slice of what it is like to have breast cancer at 25, and to bring some awareness to the issues surrounding metastatic breast cancer.

Bare tells the story of how three of my closest childhood friends helped me shave my head before my first chemotherapy infusion when I was first diagnosed with stage 3 breast cancer. My friends consoled me through my grief, hugged me when I cried, and helped me process the overwhelming fear that had pervaded every inch of my life since hearing the word “cancer”—fear about what would happen to me, how I would look, who I would become, if I would live at all.

In May, I had the opportunity to go to L.A. to watch the filming of bare. Part of me wanted to sob watching this scene from my life being acted out—but I didn’t want to be that girl sobbing on the film set, so I held back—part of me felt numb to it—it was all just so surreal—and part of me felt damn proud of myself. Proud that I had created something worthy of all these people coming together and working really hard to turn it into this beautiful film; proud of how far I have come since that day seven years ago when I wondered if I would ever feel beautiful again, if I would ever know what it meant to be loved by a man, if I’d have the strength to get through all that was to come. Proud that I found the strength, that I continue to find it every day, that even when I feel sick, I get up, push through, and have the experiences that mean everything.

In fact, I am more proud of this film than anything I ever worked on in school or in my freelance business. I believe that we have created something unique, beautiful, and powerful, and I accomplished my part of the project despite living with metastatic cancer, despite constant treatments, despite recovering from brain surgery and brain radiation.

Through bare, I rediscovered a facet of my identity that I thought I had lost amidst all the treatments and scans. It reminded me that my life is so much more than one medical intervention after another, that I am more than a cancer patient. I am a writer, a creator, a woman determined to continue living fully and purposefully.

Originally published in the MBC: YOUNG & STAGE IV, Vol 2, No 4 (Oct 2017) issue of Wildfire Magazine.

Bare was released in October, 2017 and can be viewed here. It was screened at the 9th Annual Lady Filmmakers Festival in Beverly Hills, California. Follow bare on Facebook, Twitter, and Instagram.


Rebecca Hall, co-writer of the short film bare, was diagnosed with stage 3 breast cancer when she was 25 years old, just after beginning veterinary school at U.C. Davis. At 29 years old, the cancer metastasized to her bones and distant lymph nodes. Despite her diagnosis, she continued to work as a freelance medical writer and editor, as well as starting her own outdoor yoga company, Santa Cruz Nature Yoga. Rebecca’s breast cancer returned again in November 2016 and spread to her brain. She underwent an emergency craniotomy, followed by brain radiation. Rebecca is now recovering and lives in Santa Cruz, CA with her husband and her dog, Harriet. Follow Rebecca on her blog, Cancer, you can suck it.

Name: Rebecca Hall

Age: 32

Occupation: Writer/Editor, Yoga Instructor, MBC Advocate

Age when diagnosed with breast cancer: 25 with stage 3 breast cancer, 29 with stage 4 metastatic breast cancer

Breast cancer type: Invasive Ductal Carcinoma; triple positive at stage 3; triple positive when first metastasized (to bones and lymph nodes); HER2+, ER-, PR- when spread to brain

Breast cancer stage: 4

Treatment: ongoing: herceptin & perjeta IV infusions (because I am HER2+), zoladex shots (to put me in menopause), xgeva shots (for my bones), femara daily pills (to mop up any remaining estrogen), avastin IV infusions (for brain radiation necrosis)

Tell us a fun fact about yourself that has nothing to do with cancer:

When I was 16, I competed in the World Equestrian Games for Great Britain (I was born in England).

What’s your go-to pick-me-up song?

It’s a little cheesy, but when I need an extra bit of oomph I put on the Fight Song by Rachel Platten. It’s my nieces’ (ages 4 and 7) favorite song, and we love to put it on and dance around the living room together. Whenever I listen to it, I picture doing that, and it makes me happy.

How did you discover your breast cancer?

I was laying on the floor on my stomach stretching one morning after a run, doing the same stretch that I had done the day before – done for years, actually – and it felt like I was laying on a golf ball. I felt my right breast and there was a lump. The Student Health Center nurse told me not to worry since I had zero family history of breast cancer and was only 25 (“25 year olds don’t get breast cancer”), but she sent me for a mammogram anyway, just in case. The mammogram was abnormal, so they biopsied it right then and there.

What went through your head when you received your diagnosis?

It sounds odd, but all I could focus on in that moment when they said I had cancer, was school. I was in a competitive graduate school program at the time, and I had worked really hard to get there. All I could think when they said those words was “But can I stay in school? How long will I have to step away from my studies to recover from surgery?” It’s not that I cared more about school than about dying or my family, certainly not, but I wasn’t ready to face the severity of my diagnosis yet. I couldn’t process that I might die or what having cancer would mean for me and my family. So, I focused on school instead. In time, I let the bigger, darker fears creep in, bit by bit.

What’s the craziest thing someone said to you after being diagnosed with breast cancer?

Someone once told me that I caused my own cancer. She said that she had spent hours meditating on it, and she was now sure that I had given myself the disease. She thought it probably happened because I wasn’t happy enough (this was someone who barely knew me!).

Who or what is/was your biggest source of support throughout your experience with cancer?

When I was stage 3, my parents were by far my biggest source of support. When I realized that I could not, in fact, simultaneously go through a demanding graduate program and chemotherapy, I stepped out of school and moved back in with my parents. I didn’t know anyone in their town; all my friends and siblings lived far away. So for the majority of that year of chemo, surgeries, and radiation, it was just me and my parents. They drove me to appointments, cooked for me, cared for me, and put up with me when I was too scared, sad, or angry to be the gracious patient that I wanted to be. Now that I am stage 4, I am married to a wonderful, supportive, caring man, and he has become my main source of support.

What is/was the most difficult part of being a young woman with breast cancer?

For me, when I was stage 3, it was the social isolation. None of my friends had been through anything remotely close to what I was going through. They were still in a phase of life when they spent most of their free time going out and drinking. I couldn’t do those activities anymore, and even if I could, I was no longer interested. We couldn’t relate to each other anymore. Plus, because they were so young, they hadn’t yet developed the tools to cope with my diagnosis. They had no idea how to be there for me. Many of them just disappeared from my life because they felt so unprepared – which left me even more alone. A few were wonderful, but they were the minority. My family was great, but I also needed my friends. I needed people my own age to talk to about guys and dating and to joke around with. After going through my first diagnosis, I thankfully found a group of friends and a husband who do have the skills to cope with my situation, and they are the most supportive, loving, and empathetic people.

What’s something unexpected you learned about yourself as a result of having breast cancer?

I learned that I love writing, and that I’m good at it. Pre-cancer, I was a veterinary school student, but it became clear pretty quickly that vet school was no longer doable, even when I went into remission after my stage 3 treatment. Then a former professor offered to hire me to write his next book. The only problem was… I was not a writer. He convinced me that I could do it, so I gave it a go, and it went really well. Since then I have started my own writing and editing freelance business, and I have written and edited countless articles, book chapters, books, and blogs. Eventually I gained the confidence to do my own creative writing. I started my own blog about my experiences with cancer (Cancer, you can suck it), have had a few memoir-style articles published, and even co-wrote a short film, bare, about my experience shaving my head before my first chemo. I never would have attempted any of this had cancer not forced me to leave veterinary school.

In one sentence, what words of wisdom would you pass on to another young woman who has just been diagnosed with breast cancer?

Feel everything that you need to feel, and remember that you don’t have to stay positive all the time. I felt an intense pressure to look on the bright side and remain upbeat throughout treatment. Because I could not, I felt like I was failing, and that only added to the enormous emotional burden that cancer dumped on me. No one wanted to hear how scared I was of dying, how profoundly sad I was, how angry I was. But in order to move through, and past, those feelings, I had to be given the space to feel them. They had to be given voice. So to any young woman recently diagnosed – it is ok to feel whatever it is that you are feeling. It will do you no good to suppress your feelings just to make other people comfortable. YOU are the priority, and your feelings are valid – whatever they may be!

When I began writing this blog post, I thought I could encompass most of the things I wanted to say about dating and breast cancer. It became apparent very quickly that more than one post is necessary. This entry will focus on the early days of dating after cancer.

I’ll admit that I’ve always hated dating. Girlfriends would ask, don’t you love the free meals? And all I could think was, I’d rather pay for my own steak and be with someone I know and am comfortable with. Cancer didn’t make me hate dating… it made me hate it more.

No Time To Date (The Zone)

I was 28 and single when I was diagnosed with stage two breast cancer. I looked upon people who were going through treatment and had partners with such envy. I thought they were lucky to have someone who would love and support them throughout their cancer “journey.” I’ve come to realize that this isn’t always the case – sometimes love and support don’t grow in times when you think they will. But perhaps that’s a blog for another day…

A friend tried to set me up with someone during chemo. I remember her saying, you deserve someone great. I was a bit irritated – I knew/know what I deserve. On a good day, dating is unappealing. On that day, sitting there bald and in pain, it wasn’t even an option. I was in the cancer fighting zone. Dating had no place there.

Months go by… seven brutally aggressive rounds of chemo come to an end. (yay!)
I start to thaw… (take an oncologist-approved trip to Disney World!)
Results are in and I’m a BRCA1 carrier. (well, shit)
Exactly one year goes by… mastectomy and reconstruction #2. (ouch)
I’m too scared to thaw… (so much to process)
Less than one year goes by… hysterectomy. (so. done.)

 

Even writing the timeline in point form exhausts me and it just shows the big picture. What I didn’t list are the plethora of tests and appointments associated with each phase. Everything listed above happened in less than two years. It doesn’t seem possible. I remember coming out of my hysterectomy and feeling completely done – with the pain, making difficult decisions and finding the silver lining in every situation.

Realizing You Haven’t Dated in a Long Time (The Thaw) 

As I emerged from the haze of cancer, I realized many of my friends were in relationships or getting married and I had missed out on what most people consider prime dating years. Just another thing cancer had taken from me – the luxury of time spent as a “normal” (almost) 30 something. I resented cancer and how it made me feel nervous and scared at the thought of having to go through unchartered dating territory on my own.

At first, I focused on how cancer made me different. I questioned how I would tell would-be boyfriends about my past and wondered how they would react. When I looked at the entire picture, dating was daunting and overwhelming.

I wallowed in self-pity for a short time. To pull myself out of it, I focused on moving forward one step at a time. Ironically, that’s exactly how I dealt with cancer treatment. I reclaimed my power and I continue to remind myself that my history is exactly that… mine. I’m free to share what I want, when I want. I made a silent promise to myself to never feel pressured to reveal my breast cancer story. After all, it’s only one part of the big picture that makes me who I am.

Dating Post-Cancer (The Shit… I mean, The Profile) 

As time went by and my mind and body healed, I figured I should get back into the dating game. I was a #survivor. I could handle dating – nothing would stop me! (Except rejection. I hate rejection.)

I knew I wouldn’t write about cancer in my online dating profile, although the thought did cross my mind. The idea of weeding out men that couldn’t handle what I’ve been through was appealing.

Side note: I don’t mean to imply that people who can’t “handle” dating someone who’s had cancer are weak or mean. Everyone has deal breakers and an image of how they see their future partner. But a man who sees my past as a burden or anything less than pure strength has no place in my heart.

All the pictures I selected for my profile were post-cancer, which meant I had short hair.  I always received the same questions – has your hair always been this short? (For a few years.) What made you cut it? (I felt like a change.)

I’ve never revealed my cancer experience before three dates with someone – it became my unwritten rule. I use that time to see if I feel enough of a connection to make me want to open up about it. Any time I have mentioned it, it never goes as planned. I develop a perfect script in my mind beforehand and practice pace and tone, but what comes out is nowhere near as composed or eloquent. My “big reveal” becomes a mini rant and normally goes something like this – “I have to tell you something I actually had breast cancer a few years ago stage two and like things are fine I’m good but I just didn’t know how to tell you so yeah if you have any questions let me know I had a few surgeries but my last major one was a few years ago so that’s nice.” I can’t help but laugh!

There has only been one time where someone online really pushed my buttons. In my profile, I list that I don’t want children. It’s more complicated than that – I can’t have children. Upon learning that I’m a BRCA1 gene carrier, I decided to have a complete hysterectomy. Someone messaged me and quickly asked “what’s with” me not wanting children. I dodged the question because, after only a few messages, my BRCA1 status is none of his business. He was aggressive and commented that I must be selfish. He wondered ”what type of person” wouldn’t aspire to build a family. There were many things wrong with his messages, aside from do you/don’t you want children. It enraged me that he believes that someone who doesn’t want children is self-centred. I wasn’t interested in an online debate, but I was tempted to explain the complexity of my situation to put him in his place. Minutes before I blocked his profile, I explained that he had no idea who I was and that, actually, I couldn’t have children. I hope he had the sense to reflect on his comments, but I doubt it.

I continued (i.e. trudged) on, but it wasn’t without hesitation. Like I said, I hate dating. And having to decide when and how to reveal this part of myself is something that doesn’t come quite as easily as I had hoped. But each interaction, no matter how fleeting, showed me a new part of myself. And for that alone I am truly grateful.

Tips for women going through this:

  • Don’t feel pressured to reveal that you had cancer (to anyone, potential bfs included).
  • Go with your gut – if you want to talk about it, talk about it. If not, don’t.
  • When discussing what you’ve been through, speak from your heart or the words won’t come out right.
  • When in doubt, remember – if they don’t honour you for what you’ve been through, they aren’t the one.
  • You’ve come this far and made it through so much. Don’t settle now.

Introducing Cassandra Umbriaco, a guest blogger for Rethink Breast Cancer. Since being diagnosed with stage two breast cancer at 28 years old, she combines her love of writing with a passion to help women affected by cancer. Check out her blog at cancerunder30.wordpress.com  

Cassandra loves travelling as much as she can, dresses that twirl, anything Disney and her little red Fiat – Luna. 

Name: Cassandra

Age: 32

Occupation: Communications Specialist

Age when diagnosed with breast cancer: 28

Breast cancer type: Triple Negative, BRCA 1

Breast cancer stage: 2

Treatment: Mastectomy and chemotherapy

Tell us a fun fact about yourself that has nothing to do with cancer.

I’m an unapologetic Disney nerd!  I’ve been to Disney World nearly 20 times, I own way too many Minnie ears (a must-have accessory when park hopping) and I considered making a Disney song the answer to the next question.

What’s your go-to pick-me-up song?

I don’t really have a go-to pick-me-up song.  I love all genres of music – anything with a catchy beat!

How did you discover your breast cancer?

My annual physical was coming up and I didn’t want to go – I felt healthy and didn’t see the need for a checkup.  I remember calling my family doctor’s office and saying, “So you’re just going to do a breast exam?”  Just a breast exam.

During the appointment, my doctor checked the right breast and there were no issues.  She moved to my left breast and her expression became serious immediately.  She said, “You don’t feel that?”  I had no idea what she was talking about.  She informed me that I had a very large lump in my left breast.

From there, everything moved quickly.  My family doctor and the doctor who later performed my biopsy (and double mastectomy) took my case very seriously and never brushed off urgency because I was so young.  The crazy thing was that my lump didn’t fit the usual description of a breast cancer lump.  I was calm and collected throughout the process because I was sure it wasn’t cancer.  I was so young.  It wasn’t possible.  Except it was.

What went through your head when you received your diagnosis?

I immediately said to the doctor, “But I’m only 28?”  I’m sure it sounded more like a question than a statement.  It was an out of body experience.  I was stunned.  I could hear my mom crying beside me and I thought, this can’t be.  How can this be?  Minutes later, when I came out of the initial haze, my first thought was, I don’t want to die.  My second thought was, I hate needles – how the hell am I going to get through this?

What’s the craziest thing someone said to you after being diagnosed with breast cancer?

I received a couple of questions and comments soon after surgery related to “enjoying” my new implant.  Even thinking back on those conversations makes me angry.  I want people to know that there is nothing enjoyable about a mastectomy.  Those of us who’ve had to go through it didn’t get a breast augmentation – we had our breasts removed and replaced (in reconstruction cases).  Awareness and sensitivity around that is very important to me and I don’t want other women to have to face similar comments.

In general, I wish people knew that sometimes the best thing to say is nothing at all.

Who or what is/was your biggest source of support throughout your experience with cancer?

Without a doubt, my family and friends.  Here’s an excerpt from a blog a wrote that sums it up:

November 11, 2016: 11.12.13. Hands down one of the worst days of my life.  Even still, I hate the feeling of leaves falling on me because they were falling in abundance as I walked into the doctor’s office for my biopsy results.

There are many words I could choose to focus on when thinking about this day – terror, sadness, anger, grief, shock.  Those words still cross my mind. But the one I decide to focus on – love.

(After my first mastectomy + reconstruction on November 27, 2013) I was being wheeled out of recovery and my family saw me and along they came (even though they weren’t immediately allowed to come with me).  Mom, Dad, Nonnie, Aunt Angie, Aunt Mary and Rusty – all in a row.  I was so drugged up and in serious pain, I could hardly move or open my eyes.  But I could hear them asking the nurses questions and calling my name.  I wasn’t able to show it, but I was cracking up.  What a hilarious group they made – slightly angering the nurses with their questions and comments that came in quick succession.  “How’s she doing?”  “Cassandra?”  “Sweetie, can you hear me?”  “Where is she going now?” “Is she okay?”  “Can we go with her?”  “When can we see her?”  “Cassandra?”

As I was wheeled down the hall, I thought – my God, I love these people.  They would follow me anywhere just so I wouldn’t be alone.  To make sure I knew that I was loved and safe.  And to make me laugh.

That kind of love has serious, life-altering power.  I was filled to the brim with it.  I inhaled it, held my breath and kept it there until April 11, 2014 – my last chemo.  For that long, brutal winter that love helped me survive.  I think it still does.

What is/was the most difficult part of being a young woman with breast cancer?

From the moment you’re diagnosed, it’s a rollercoaster.  You are bombarded with appointments and questions and fear and pain.  Your mind is on overdrive and so are your emotions.

Throughout treatment, I couldn’t find my niche.  I didn’t want anything to do with pink ribbons.  Traditional places for support didn’t appeal to me.  I wasn’t able to identify with any other cancer patients, in part because they weren’t (near) my age and also because I couldn’t see through the clutter of chemo to even want to seek out people like me.

Having a double mastectomy, chemotherapy and a hysterectomy within two years took its toll.  I often struggled when in a room with other “normal” young women who hadn’t gone through the many trials of breast cancer.  I felt deformed and questioned my worth.  But time has helped to heal those wounds.

What’s something unexpected you learned about yourself as a result of having breast cancer?

I knew I was tough, but I didn’t know I was this tough.  My capacity to handle physical pain is much more than I would have ever thought possible.

Having breast cancer also heightened what I already thought about beauty – that it’s so much more than our appearance and can be found in the darkest of times.

For instance, losing my hair was difficult.  To have some control over the loss, I shaved my head the night before my first chemo treatment.  A close friend came over to shave it and we expected there to be tears – it broke my heart to chop my long, luscious locks.  Slowly but surely the strands fell until only a buzz cut remained.  Mom was there, of course, and we chatted and laughed throughout the process and ended with a champagne toast.  I was terrified (with chemo looming), but I felt incredibly loved and supported.  And when I looked in the mirror at my new ‘do,’ I felt truly beautiful.

In one sentence, what words of wisdom would you pass on to another young woman who has just been diagnosed with breast cancer?

In this case, it’s difficult to limit words of wisdom to one sentence.  I would want to tell her that I know she’s the most terrified she’s been in her life.  That I know she’s wondering why this happened to her at this age.  That in no way is this fair or okay.  I would tell her to get ready for battle because that’s what this is – an all-out war.

But I would also tell her that she’s so very strong – much stronger than she realizes.  I have no doubt that she can do this.

There is a saying that I love and live by.  It’s simple, but encompasses so much.  My one sentence would be…

Have courage and be kind.

November 5 2009, 1:23 PM

I have a high tolerance for pain.  Anyone who knows me well – family members, doctors, estheticians – will confirm this.  My husband and I agree: I am tough. Not French Foreign Legion tough, but maybe Canadian Special Forces tough.

However, for the last 12 hours and, to a lesser extent, for 48 hours before that, I’ve been enduring wave after wave of intense abdominal pain. I emit weird primal noises and make fists and kick one foot around like a dog dreaming of chasing rabbits… And then the pain passes and, like a crazy person, I type some more.

It’s the drugs – my hitherto mild-mannered capecitabine and lapatinib are now mercilessly kicking my butt.  Causing stomach cramps, intestinal cramps, nasty, painful, crampity-cramps and no small measure of the trotskys…

If it were possible to be punched in the solar plexus and kneed in the nuts while in labour, that’s how I feel.

I have a hot water bottle pressed against my stomach at all times. My husband makes them so hot they have to be wrapped in gigantic towels for the first couple of hours. I may have poached my innards. Don’t care – the relief is glorious.

My mom is now here, taking over where my husband left off when he went to work this morning.  She has fed me mashed bananas and electrolytes and soda crackers. She is busy in the kitchen now – I can hear her over my own weird primal noises; the comforting sound of her clattering around down there.

Another wave is coming.  I really need to stop with the typing. Viva Imodium! Charge!

Name: Karen

Age: 27

Occupation: Recruitment Advisor

Age when diagnosed with breast cancer: 27

Breast cancer type: Breast Cancer, Hormone Positive/HER-2 positive

Breast cancer stage: IV, metastasized to bone

Treatment: Currently undergoing 9 months of chemo/adjuvant chemotherapy – then TBD

Tell us a fun fact about yourself that has nothing to do with cancer

I love painting! I don’t consider myself a Picasso by any means, but I have several of my paintings hanging in my apartment

What’s your go-to pick-me-up song?

There are quite a few – I have a specific “chemo vibes” playlist that I have on repeat the day before and the morning of chemo rounds. My favourite song on there is Tom Petty’s “Won’t Back Down”

Currently really digging Bruno Mars “What I Like” as well

How did you discover your breast cancer?

I felt the lump myself, and made an appointment right away. It was initially dismissed as an infection, but when antibiotics didn’t do anything and the lump continued to grow rapidly I went back and went through the ultrasound/mammogram/biopsy process.

What went through your head when you received your diagnosis?

I immediately thought about my family and friends – how was I going to tell them? What did this mean for me? How much of my life was I going to miss out on?

What’s the craziest thing someone said to you after being diagnosed with breast cancer?

“At least it’s breast cancer and not something worse” and also “Well, you’re going to get a new pair of boobs!”

Who or what is/was your biggest source of support throughout your experience with cancer?

My family and friends. I have been absolutely blessed with an amazing group of people in my life who have really rallied around me, especially in times of need.

What is/was the most difficult part of being a young woman with breast cancer?

Dating/relationships. It’s hard enough to navigate the dating scene anyway, let alone when you have a diagnoses like cancer, how do you let someone know? Is it fair to bring them into this situation?

What’s something unexpected you learned about yourself as a result of having breast cancer?

That I’m capable of pushing through what seems like the darkest days and continue to be positive and happy – I’ve learned to appreciate what’s important in life and to be grateful for what I do have.

In one sentence, what words of wisdom would you pass on to another young woman who has just been diagnosed with breast cancer?

The diagnosis makes it feel like the world is crashing down all around you, and you don’t know how you’ll ever make it out of the rubble – but fight, fight hard one day at a time. Pull your army in close, educate, and advocate for yourself. Sometimes it can feel like the diagnosis has taken over, and you’re just a shadow of your old self, but don’t let that happen – you’re still YOU!


 

For more #YWMBC profiles click here.

October 19 2009, 4:37 pm

I don’t know how long the crocodile hunter thing is going to sustain me, so I thought I should ask everyone to give me their own versions of “23%” – bogus statistical probabilities to help me keep perspective on that nasty stat that threw me for such a loop last week.

My husband volunteered that there is a 23% chance the average person would lose their mind before actually being able to understand statistical mathematics. My friend Sharyn said there is a 32% chance that the reporter who quoted the stats is dyslexic. But the best by far was when she added that there is in fact no 23% — that it’s always and only a 50% chance for any of us — you either live or die, that’s it. Smart cookie, that Sharyn. I give her a 23% chance of getting all verklempt when she reads this. More likely she’s saying “That’s right. Atta girl.”

Name: Rose Anne Crisostomo

Age: 39

Occupation: Human Resources Manager

Age when diagnosed with breast cancer: 36

Breast cancer type: Invasive Ductal Carcinoma

Breast cancer stage: Stage 2 (estrogen and progesterone positive), BRCA 2 POSITIVE.

Treatment: Six rounds of Chemo, 25 rounds of Radiation, Surgery ( which included a double mastectomy, fat grafting, expanders, and nipple tattoo)

Tell us a fun fact about yourself that has nothing to do with cancer

When I was little most girls played teacher, I played lawyer. I asked my mom to buy me files, paper and pens and I would draft up divorce papers.

What’s your go-to pick-me-up song?

Happy by Pharrell Williams

How did you discover your breast cancer?

I was 24 weeks pregnant at the time, and noticed a big hard lump on my right breast, as it was my first pregnancy I thought it was a clogged milk duct.

What went through your head when you received your diagnosis?

I went numb. I did not cry until later that day, but I started to think, what’s going to happen to me?, what’s going to happen to my unborn child?, what about my family and friends?

What’s the craziest thing someone said to you after being diagnosed with breast cancer?

If it was going to happen to anyone it would be you, your mentally stronger than I am. (my thoughts were….did she just really say that to me?????) Ignorance is bliss I guess.

Who or what is/was your biggest source of support throughout your experience with cancer?

I would not have made it without the help of my mom, who moved in with us for seven months (just after I was diagnosed with cancer) and took care of me, my husband and ultimately little Benjamin. At 72 years young, she stepped up to the plate and looked after us all. Through emotions, exhaustion, and never ending work of looking after a newborn, she was my rock, and my very best friend. Of course my husband as well, he was there for me at my lowest points, your know your marriage is strong when he has the strength to shave his wife’s head.

What is/was the most difficult part of being a young woman with breast cancer?

I think the unknown. You live your life day by day, but you really don’t know what the future has in store for you. You will always be nervous when you have to do routine blood work, and annual check ups. Neither my fight nor my journey is over, but I’m hopefully the worst is behind me.

What’s something unexpected you learned about yourself as a result of having breast cancer?

I am stronger than I was before, and even though I’m not always confident, I know I am a fighter. I’m happy, and blessed to be alive.

In one sentence, what words of wisdom would you pass on to another young woman who has just been diagnosed with breast cancer?

Fight like crazy to get your life back because after all that’s what you’re fighting for: your life.

…………………………..

For more #YWBC profiles click here or to be featured contact Shawna@Rethinkbreastcancer.com

October 15 2009, 12:04 pm

You know what I usually do when something really upsets me? I usually sit down on my kitchen floor and cry. It’s not the most comfortable place to cry (that would be my husband’s arms) but I often end up there. I seem to have a need to get low to the ground. Get terra firma (or kitchen tile) under me so I don’t wobble and break like a teacup.

I tell you this because I recently spent some time on my kitchen floor, right after reading this story in the Ottawa Citizen, which talks about a new program for young women with HER-2 positive breast cancer. “Sounds great,” I thought. “Maybe I’ll get involved,” thought I.

And there, smack in the middle of the article was this line:

“…it’s easy to see why HER2 is so feared: In a study last year at the University of Texas, women with early stage HER2-positive tumours were reported to have a 23-per-cent survival rate, compared with 90 per cent for breast cancer patients who do not test positive for the protein.”

Plop – straight to the floor. Tears (big fat ones) and terror (also robust) ensued. How dare they?  How dare they just hit me with that 23% when I really and truly believed that I would beat this?  Believed it to the point that I publicly chastised anyone who didn’t believe it.  I more than believed it – I was full of conviction; I knew I would beat it.  And then, one little line in one little article sends me to the kitchen floor, my conviction shattered and my mascara all over the place??

Yes, actually. That’s all it took. Suddenly I was aware that my steely resolve and hell-bent determination are a little more fragile than I realized.

Slowly, the fatso tears became little spatters and then stopped altogether and reason – or my version of it — took over. I concluded that deeming the University of Texas researchers a bunch of hacks was appropriate. As was feeling very unkindly toward the reporter who included that line in her story. Thanks a lot, stupid no-cancer-having lady, for your blithe reference to these death stats concerning something I have to live with every day. Why don’t you go back to writing about five great picnic spots in our nation’s capital and leave me to my shattered optimism.

There – being nasty made me feel better already. Next I went into action mode, pouring myself a nice big glass of wine and Googling all the statistics for various kinds of death, thinking surely it’s harder to survive car accidents and parasitic infections?

That’s when I found a story about that crocodile hunter guy. Yes, the crocodile hunter guy. I know this sounds completely irrelevant, but stay with me: There he was, Steve Irwin, cheerfully bounding around swamps and wrestling dangerous reptiles one day – then suddenly pierced through the ticker by a normally gentle sea creature the next.  He didn’t know what was going to happen to him when he went into the reef that day.  He probably had fewer reservations about swimming with those big portobello mushrooms than he would ever have had about hanging out in croc-infested swamps — and you can bet the stats for crocodile deaths are much higher than for death-by-sting-ray.

Which is when I realized that statistics are for morons. In reality, you can never know when or how you’ll die, you can only choose how you’ll live. Some people wrestle reptiles, some wrestle cancer.  In the end, the obvious danger may not be the thing that strikes you down.  After all, that’s why I still wear a bicycle helmet.

So, thank-you dearly departed crocodile guy – I bet you never thought you’d come to the rescue of a Canadian girl with HER-2 positive cancer. Life is full of surprises, and stupid statistics abound, but I am going to live. This cancer is not going to win. I knew I cracked open the Australian wine for a reason.

Tomorrow April 7th is World Health Day: A global health awareness day sponsored by The World Health Organization (WHO). This year’s focus is mental health. It is interesting to me that the World Health Organization has chosen this topic for their campaign this year. Surely there are other more important health crisis across the globe that trump (no pun intended) depression and mental health? Or are there?

According to a press release put out by WHO in March:

Depression is the leading cause of ill health and disability worldwide. According to the latest estimates from WHO, more than 300 million people are now living with depression, an increase of more than 18% between 2005 and 2015. Lack of support for people with mental disorders, coupled with a fear of stigma, prevent many from accessing the treatment they need to live healthy, productive lives.

They go on to say that they have identified strong links between depression and “non-communicable disorders and diseases” meaning that people with, let’s say… CANCER have a higher risk of depression.

This is a huge acknowledgement in the psychosocial oncology world and one that people diagnosed with cancer need to be aware of. I have heard one too many times from women with earlier stage breast cancer that once treatment is over they felt like they were hit with a title wave of sadness and grief. These two questions linger once the dust settles:

What the F*%k just happened?

Followed by….

Why don’t I feel relieved and happy to be finished with that part of my life?

No cancer equals all better

There is a clear expectation that if you look good you feel better. There is even a program based on this assumption. Just because someone doesn’t look ill or the poster image of a cancer patient doesn’t mean that they are completely healed. There are often lingering physical and emotional side-effects (laundry list here), post-treatment or adjuvant therapies like Tamoxifen and the biggie – recovering from trauma.

Note: Those with metastatic or stage 4 cancer often experience some form of depression or anxiety that requires treatment. They are in perpetual fear and anxiety as they are scanned every 3-4 months.

Many people have heard of Post Traumatic Stress Disorder (PTSD) when it comes to war or an act of violence, but often people don’t think of a cancer diagnosis as the cause of that kind of extreme stress. I am not sure if this belief comes from some sort of normalization of cancer in our society (the “everyone gets cancer” attitude) or maybe it is a belief that cancer is curable? A diagnosis can and does cause some people such extreme stress that 1/3 of people with cancer experience anxiety disorders or depression. That’s 32% of cancer patients according to a study published in The Journal of Clinical Oncology in 2013.

Let me break down some examples of cancer related trauma:

Being diagnosed with the disease

THOUGHT: I may die.

Diagnosis of an advanced cancer

THOUGHT: This disease is incurable and I will die from it.

Painful tests and treatments

THOUGHT: People are poking and prodding me. My body is not my own.

Pain from the cancer itself or other physical issues

THOUGHT: I feel pain and my body is never going to feel the same.

Test results

THOUGHT: The cancer has progressed and attacked other parts of my body.

Long hospital stays or treatments

THOUGHT: I am in a place with sick people. I am a sick person. I am a cancer patient.

A cancer recurrence or the potential for recurrence

THOUGHT: I might get cancer again and there is nothing I can do to stop it or control it. I am at the mercy of this disease.

Often people don’t know they are experiencing any type of cancer related mental health issue until they are there, and they can sometimes feel quite shocked and ashamed. There can be feelings of guilt – you should be feeling grateful or “lucky” that you made it through and your body is showing no evidence of disease. Or you may feel pressure to be happy and to move on from the experience but you can’t.

Being Prepared

I know I say it a lot but I am going to say it again…wait for it…Knowledge is power! Especially when you are blind-sided by feelings that seem antithetical to what you think you are supposed to feel. We hear this with post-partum depression a lot. Here you are – you just had a baby. The joy and happiness you are supposed to be feeling is clouded by anxiety, fear and sadness. No one prepared you for this. You always wanted to be a mother and you always heard this is supposed to be the happiest moment of your life. And then it’s not.

I had post-partum depression and I remember desperately wishing someone had told me or warned me this might happen. Wishing I had the heads up and was prepared so that it was less scary and frightening when it came so that I could be pro-active and put supports and measures in place just in case…and I did with my second child.

It is important that those diagnosed with cancer are prepared in a similar way. While referrals are often made to psychosocial oncology resources DURING treatment, patients are left holding the proverbial bag after treatment. Many are not aware these support services are accessible once their hospital treatment is over, and most initially feel like maybe they don’t need them. This can leave you scrambling in your darkest hour when you are most vulnerable.

As mental health continues to get more and more attention as a health epidemic, it is important that we start with educating our most vulnerable populations. Healthcare providers need to acknowledge risk factors pre-emptively before it becomes a crisis so that those who are at risk can feel empowered to speak up if and when the time comes. They can also arm patients with tools and resources to determine whether they need help and where to go to get it.

The Check-List

The following is a great list from Cancer.net.

If you are experiencing the following, it’s time to follow up!

Mood-related symptoms

  • Feeling down
  • Feeling sad
  • Feeling hopeless
  • Feeling irritable
  • Feeling numb
  • Feeling worthless

Behavioral symptoms

  • Loss of interest in activities that you previously enjoyed
  • Frequent crying
  • Withdrawal from friends or family
  • Loss of motivation to do daily activities

Cognitive symptoms

  • Decreased ability to concentrate
  • Difficulty making decisions
  • Memory problems
  • Negative thoughts. In extreme situations, these may include thoughts that life is not worth living or thoughts of hurting yourself.

Physical symptoms

  • Fatigue
  • Appetite loss
  • Insomnia, which is the inability to fall asleep and stay asleep
  • Hypersomnia (excessive sleepiness)
  • Sexual problems, such as decreased sexual desire

Note: The cognitive and physical symptoms listed above may be side effects of the cancer or cancer treatment. As a result, doctors place more emphasis on mood-related and behavior symptoms when diagnosing depression in a person with cancer.

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For more on the Psychosocial click HERE!