Skip to main content
Rethink is proud to republish the original blog posts of Leanne Coppen first featured by Chatelaine. Leanne passed away in 2011 from metastatic breast cancer and we are honoured that her friends and family have allowed us to share her words here on the Rethink blog.

Torturous as yesterday’s post was to write, I had to do it. Thanks to everyone who managed to pluck up the courage to reply to the unrepliable with comments and e-mails.  Apologies to everyone who felt paralytic or overwhelmed (I think that’s all of us) but this was only ever going to be a very bumpy ride. Lifejacket is under the seat and there’s a barf bag in the seat pocket in front of you – let’s hope we don’t need them too often.

For the moment, the sun is actually beginning to emerge from behind the dark clouds for a change: we have found and are applying for a clinical trial at last!  The study sounds promising — the most promising of all the experimental drug trials we were able to find — and there is a study site in Montreal, which isn’t totally ideal, but it could be worse, it could be much farther from home.  It could be outside Canada.  I’m not sure how swift the enrolment process will be or how we are going to handle the financials or logistics, but I’m already feeling so much better and more hopeful just knowing that there is a plan underway at last.

It’s amazing how much difference a little glimmer of sunlight can make.  We are going to be doing something.  And it might actually work!!

Unfortunately, getting to this point has been excruciating and, as anyone who read yesterday’s post can attest, the process has forced me to face the grimmest realities.  Among them, and second in grimness only to confronting my own mortality, was the realization that our medical system completely fails in its support of patients with cancers that don’t respond to standard treatment.

The transition from a supportive, comprehensive cancer-care system to the bleak no-man’s-land of post-standard-treatment was so sudden and jarring that it took me a while to realize that I had in fact been left to my own defenses.  Apparently the system just isn’t designed to take you any further than approved drugs and standard treatments, so if you have to go the non-standard route, you have to navigate it yourself.

Meaning it is up to the patient to research and choose her own clinical trial.  The patient, who in the majority of cases does not have a medical degree.  The patient, who is reeling from the news that there are no more treatments for her.  The patient, who is probably grappling with gigantic questions like “Am I going to die?”  The patient, who hopefully speaks English fluently, knows her own medical history intimately and is handy with the Internet.

Aside from the basic impracticalities of this situation, it has the psychological effect of leaving the patient out in the cold.  It sends a message of hopelessness.  It says: your cancer is so bad, we’ve given up.

I believe I wasn’t totally abandoned only because I and my family reached out repeatedly for help to my oncologist, the hospital social worker, my amazing family doctor, a clinical trials nurse, and many, many other people.  I’m deeply grateful to all of them for their help, but I’m still stunned and alarmed at the totally unacceptable failure of a system I believed in and trusted with my life.

But enough about all that for now. Really, I can be all stunned and alarmed later.  Right now I just want to enjoy the sunshine.

Rethink is proud to republish the original blog posts of Leanne Coppen first featured by Chatelaine. Leanne passed away in 2011 from metastatic breast cancer and we are honoured that her friends and family have allowed us to share her words here on the Rethink blog.

It used to come mostly at night, but lately it’s had the audacity to creep in even in bright sunshine. I’ll be going about my business when I get a sudden flutter in my belly, a lump in my throat. Silent flashes of anxiety. Brief, lightning-clear moments of reckoning: My god, is this really happening to me? Something shifts. Everything around me takes on a slightly unreal aspect, becomes slightly less solid. Fear is on the threshold. Don’t think it, don’t let it in. Everything I see is coloured by it; it settles over every surface like a layer of poisonous dust. Everything I do and say, every move I make stirs it up, unsettles it, thickens the atmosphere with it so I can’t ignore it anymore.

Am I going to die?

Sometimes, by the time I am in bed at night, and the house is quiet, I can barely breathe. Please please make it stop take the cancer away that’s enough now please just let me have my body back my life back let me live…  I try to distract myself, push it down, meditate away from it. Then I let it come, cry, try not to go crazy. My husband holds me in his arms and kisses my hair and wipes my tears away with a corner of the duvet as the Ativan melts under my tongue. Slowly my breathing steadies.  My heart stops pounding so fast. I’m exhausted now and my body will sleep, its only true refuge from the fear.

But it will be back, again and again. No matter how good my good days.  No matter how angry my anger.  The fear keeps coming back.  Am I going to die?

How can it not come back?  How can anyone around me, or anyone who reads this blog, pretend they haven’t gone there in their heads, asked the same question? Let’s admit it. Let’s not pretend that we don’t occasionally get stopped in our raging, planning, hoping, fighting tracks by the thought that this cancer might just kill me, and much sooner than we’d ever imagined.

The thing is, it can feel like even admitting to the fear – admitting that I wonder if this is going to kill me (meaning kill me soon) – is somehow giving up. But I’m not giving up.  I’m not. I won’t, I promise.  I feel like I have to be very clear about that because the theory goes that if you get it in your head that this thing is going to beat you then it does and you die.

I’m not entirely convinced of the truth of that theory – and I certainly don’t think it’s fair to deny someone the right to confront their own fears of death on the basis that thinking about it makes it come true – but in case the people who love me believe it, I’m telling you all now: I’m not quitting.  There’s a difference between letting myself consider the possibility that I might die and calling it quits.

What I want is to face the fear and then send it back down into the reeking depths from which it comes.  But facing it is such a tall order!  When I admit to myself that yes, this cancer could kill me, the first thing I think of is how hard that would be on my husband, my mom, dad, brother, family, friends, and yes (insert knife into heart here) my little girl. Causing every single person I love pain and loss and sadness is just about the worst fate I can imagine. It makes me feel helplessness and sorrow on a level that is almost physically painful.

That’s the number one reason thinking about my own death sucks – because of how I imagine it would hurt the people I love.

I actually don’t think I’m afraid of death itself. Pain and suffering, yes (definitely, unequivocally.)  But death?  Everyone is going to die.  We know this.  We just can’t wrap our heads around it. It’s hard to be afraid of something you can’t wrap your head around. It’s just too big a concept, just too miraculous and natural and kind of peaceful to actually be scary in and of itself.

What is scary and awful is the idea of the departure gate: saying goodbye to everyone and everything I love.  And it’s less scary than it is just plain awful.  Especially if it’s preceded by suffering and making everyone around you watch helplessly, knowing that they’ll just endure a whole new kind of suffering when you eventually do die… Ugh. Now that’s torment.

So why think about it?  And why, for the love of god, torture everyone by writing about it?

Because it is unfortunately part of my reality now, and if I don’t think about it or talk and write about it, it will drive me crazy.  Like wandering around grocery stores in bare feet and pajamas crazy.  Like putting vegetable soup in the washing machine crazy.  Crazy crazy. Certifiable.

Trying to avoid thinking about it or talking about it just makes it worse.  It makes me feel more isolated, which in turn makes me feel more afraid.

So I’m for tackling this topic head-on and not side-stepping any harsh realities of my so-far untreatable extremely aggressive life-threatening jerkface cancer.  Which means that lately I’ve been saying out loud to the people closest to me “I’m afraid I’m going to die.”

These are not easy conversations to have, not only because it’s really frigging difficult to talk when we’re crying and blowing our noses so much, but also because there’s not a lot to say about it.  Of course we have all thought about it.  We don’t like to think about it, and we want to believe that I will recover and live a long, healthy life – which I plan to do – but the thought that I might die has crossed our minds, all of us.

I’m just asking that we let the fear come, look it in its beady little eyes as best we can, and allow ourselves to cry about it, acknowledge it, be angry about it – whatever – just as long as we don’t try to ignore it.

Somehow I believe I can make the idea of dying just a little less terrorizing if I let myself get familiar with it.  If I can do this I believe that fear won’t colour everything, that it won’t always be lurking and looming, and I might be able to slip out of its grip and move away from it, toward other thoughts. I might actually get to enjoy my life fully, and be completely engrossed in all the things about it that make me want to live it for a long, long time.

At the very least, when I’m with the people I love, fear shouldn’t be allowed to pull up a chair and sit at the table with us, scratching its belly and belching in our faces as we all try furiously to ignore it.  If it shows up we can say, “We see you.  You’re ugly and you stink.  Now get out of here.”

If we’re going to sometimes be afraid, at least we can be afraid together. I want for it to be okay to talk about death as just one of the possibilities because it is one of the possibilities and if I don’t face it, it’s going to make me crazy. It is.  But we can also spend a lot of time talking about the other possibilities too, like beating this thing, finding the unconventional treatment that actually works for unconventional me, and imagining together those happy days in the future when I bore everyone who comes within hearing range with the story that ends with the line “…and then the doctors said, We don’t know exactly what happened, but the cancer is just GONE.”

Rethink is proud to republish the original blog posts of Leanne Coppen first featured by Chatelaine. Leanne passed away in 2011 from metastatic breast cancer and we are honoured that her friends and family have allowed us to share her words here on the Rethink blog.

If the seven stages of grieving are anything like the seven stages of getting spectacularly grim news about your cancer, then I’m right on schedule:  I am no longer drowning in despair or frozen in shock, but am awash in the turbulent waters of anger.

This is good because it turns out that the upward climb from the bottom of the abyss is steeper and slipperier than at first it looked, and I was starting to slide back down a bit into the darkness of fear and despair.

But then yesterday I got mad.  Figuring out what my next step in fighting this cancer is supposed to be has been incredibly difficult and intimidating and I was feeling frustrated, frightened and unshepherded as I tried to navigate the clinical trial quagmire. And then, just when I was on the verge of crumpling into a heap of hopelessness, my fear and frustration transmogrified into a clear, burning rage.  It was like a blinding spotlight aimed squarely at a system that seems ill-equipped to support a person facing this more-desperate-than-average cancer flummox, and at a disease that targets mothers, fathers, best friends, and daughters instead of just taking out monsters like child molesters and corrupt politicians.

To my surprise I found myself smashing my fist down on the kitchen counter.  I did this about five times.  Then I did it about ten more times.  It may have looked a little silly but it sure felt better than collapsing into tears and being overcome with fear and frustration.  

I suddenly understood why men kick things when they’re mad, especially things they have just stubbed their toes on. The fist-pounding made me feel less vulnerable, somehow stronger.  Also a tiny bit cro-magnon. And then it started to hurt, so I considered kicking in some drywall, mentally appraising all the walls in our house for smashibility, and wondering if we had an axe…

Next, I had several very clear premonitions of spending the afternoon with blood-soaked towels tied around my limbs while waiting to get stitched up in emerg. Maybe the axe is not such a good option for me.

That’s when I remembered the “Rage Box” that my friend Karen made me.  It is a cardboard box in the garage filled with old chipped cups wrapped in newspaper.  The instructions read as follows:

1) Place in an area where things that break can be thrown. Preferably somewhere that you won’t have to clean up because who the hell wants to do that?

2) Start to feel the rage… run to box, grab a mug, throw against the floor, SCREAM!

3) Repeat as often as necessary.

4) Call when you need a refill.

I smashed everything in the box out in our back laneway (but did not scream so as to avoid neighbours calling police.)  I smashed some of them twice if they still looked smashable after the first smash. And my god it felt good.  I have already requested a refill for the rage box.

Look out cancer, I’ve just discovered rage, and I like it.

Rethink is proud to republish the original blog posts of Leanne Coppen first featured by Chatelaine. Leanne passed away in 2011 from metastatic breast cancer and we are honoured that her friends and family have allowed us to share her words here on the Rethink blog.

First the good news: Although all CT scan results are not yet in, so far there is no evidence of metastasis in the bones.  It could very well be that the rib I cracked this morning (with one big hearty cough-sneeze combo at breakfast) is just a “cough fracture.” But it hurts like hell, so you’ll forgive me if I’m a little stoned on pain medication as I write this.

And now the bad news…in fact the worst news we have received since my diagnosis almost 2 years ago:

The nodules in the lungs have grown and while some lymph nodes have shrunk, some have enlarged and there are new ones in the space between my lungs.  All of this means that it is official: my cancer does not respond to standard chemotherapies. Actually they’ve tried all but one, and they’re holding that in reserve for now. Better I try some experimental treatments, they say.  Better we find a clinical trial, they say, though they don’t have one in particular in mind right now.

I am simply devastated.  I feel desperate and frightened and angry. Nothing has been able to stop this cancer, and I fear that nothing will. I feel mystified – utterly and completely – by the idea that something so ferocious has made me its target. I am simultaneously on the kitchen floor, under the duvet and wandering around disoriented and underdressed in the blizzard.

There have been a lot of tears today – a lot. My husband and I have instinctively been no further than a few feet apart at any time since receiving the news, as if we are afraid that this cancer well and truly means to separate us. The invisible tentacles of my parents, my family, and my friends have reached out through phone calls, texts, e-mails and general vibes of love, weaving a kind of blanket of collective protection around me. And my daughter?  Oh, my baby.  That’s the hardest of all.  I can’t even look at her without thinking, I just want to see you grow.

 

When I was first diagnosed with breast cancer in May of 2016 at 34 years old, I felt isolated and afraid. My treatments were spent in a room full of women much older than me, the constant stares and whispers as I walked past that I was too young. I wished so badly that I was but I had become one of the 5% of women facing breast cancer under the age of 40. My life was now spoken about in terms of statistics and I was blanketed with chemo and radiation to increase my chances of survival. Once treatment ended though, that sense of security was suddenly ripped away and I slipped into a dark place of fear and uncertainty of my future.

But then something happened. A woman I followed on social media posted about an event called the YSC Summit, a conference put on by the Young Survival Coalition (YSC) for young women diagnosed with breast cancer between the ages of 18 and 40 and their co-survivors. I was apprehensive to go as I didn’t know anyone but I thought what do I have to lose?

YSC in Oakland (2017), YSC in Orlando (2018)

I made the trip down to Oakland, California last year which ended up completely changing my life and turned things around for me. I was surrounded by hundreds of young women who were not only surviving but thriving, and I thought to myself if they can do it, then why couldn’t I?

As soon as I got back home, I saved my spot for the 2018 YSC Summit in Orlando, Florida and started making plans on attending. I was fortunate enough to qualify for a travel grant this year through the YSC which covered a significant portion of my travel costs allowing me to attend without the added financial burden (they also offer fee waiver applications which help cover the cost of the conference itself). When I arrived, I was met by hundreds of women and their co-survivors, some familiar faces from the year before and lots of new ones that I would soon get to know over the weekend.

The three-day conference was packed full of events from general sessions on nutrition and exercise to breakout sessions on confronting the fear of recurrence and building a family after cancer, to legacy retreats for women living with metastatic breast cancer. There were keynote speakers including surgical oncologist Dr. Lori Wilson who spoke about her own struggle with breast cancer and dozens of vendors providing breast cancer information and support.

While there were so many incredible takeaways from this event, these were some of the most valuable lessons I learned from this year’s YSC Summit:

A group of young survivors including CEO of the YSC, Jennifer Merschdorf
1. You are never alone.

Call it a sisterhood. Call it a community. Call it a tribe. No one gets it more than those who have been through it. They understand the emotional and physical effects of treatment on our bodies, the struggles with self-confidence after undergoing multiple surgeries, and the uncertainty of navigating life after cancer. From the moment you walk into the conference, you are a part of this huge family. No explanations needed, no judgments passed. Just this instant bond between people who get it.

2. It’s okay not to be okay.

We often hear those words “be positive” or “stay strong!” But at one of the breakout sessions on Living Fully After Cancer, guest speaker and psychotherapist Julie Larson reinforced what we all need to hear again sometimes, that we don’t need to be strong all the time. Some days are going to be crappy and others we may feel great. We just have to acknowledge how we’re feeling in each moment and accept that as it is.

3. Co-survivors need support too.

As much as we are struggling, our family, friends, and loved ones are too. They may feel helpless and afraid as they watch us go through countless treatments and surgeries and neglect to tend to their own needs. That is why the YSC provides breakout sessions for co-survivors ranging from topics such as mindful caregiving to being intimate after cancer, and how to show self-compassion. Because if you’re not taking care of yourself and having your own needs met, then how are you able to care for your loved ones?

4. Don’t be afraid to reach out for help.

I commend the YSC on providing one of the most valuable tools at the summit: free drop-in counseling sessions for both survivors and co-survivors. Coming to an event like this can stir up a lot of feelings and emotions. Remembering those we’ve lost and struggling with survivor’s guilt and the uncertainty about our own futures. Breast cancer is an emotional rollercoaster ride and being able to reach out for help to address some of these issues is really important.

And finally…

5. Everyone’s story is unique.

Although we are commonly bonded through breast cancer, our stories are all unique. From the differences in diagnosis, treatments, and surgeries we receive, to the way in which we process them is going to be very personal. Some people may find it therapeutic to share their stories while others want to keep more private and that’s okay. There is no right or wrong way through this. We just need to acknowledge our experiences as our own.

Me and Meghan Koziel, who inspired me to attend for the first time last year; Me getting up close and personal with one of the cute dogs at the breakout session on pet therapy.

 

The next YSC Summit is slotted to take place March 8-10, 2019 in Austin, Texas and I’m already excited about going back. The bonds that I’ve made and the information I’ve taken away from this incredible event is second to none. And to think I almost didn’t go that first year. Well let’s just say, I’m glad that stepped out of my comfort zone and took the plunge.


Kim Angell is a breast cancer survivor, advocate and blogger that is living and loving life on Vancouver Island, BC. Check out her blog at http://smilethroughthefog.com

This is CANSWER HIVE. Tips and insights shared directly from Rethink’s Young Women’s Network (RYWN).

We asked the CANSWER HIVE which products have been the most helpful during treatment and post-treatment. From mouthwashes, to pillows, toques, lotions and more- find out why these products made the list of favourites. 
Laura says:

Under arm pillows and zero gravity chair post surgery made for comfortable sleep.

Shelley says:

Unscented lotions. Warm socks. Awesome toques. Blankets. Headphones for during treatment or waiting rooms or late nights.

Dee says:

My friend loaned me her kindle which was helpful because I would fall asleep or forget where in the story I was. Some books were too heavy to hold up and I couldn’t rest them on my belly post surgery.  Comfortable, easy to get into clothing.  I agree with the anti gravity chair/recliner.  I napped in one that was easy to get up from. People that made me meals saved my sanity.  Good hats, toques, scarves.  Glaxol base lotions for radiation burns. Headphones to listen to podcasts and music when the insomnia would become brutal.

Joy says:

Glaxol base lotion was the best thing during and after radiation! My skin was extremely dry and sore. It was the only thing that worked and provided relief. Nothing else came close and I literally tried everything.

Rachel says:

My cooling gel pillow that kept me cool at night during my hot flashes. That thing was a life saver.

Stephanie says:

Heart pillow for support and elevating the arm away from the lumpectomy and lymph node surgical site.

Miranda says:

Biotene mouthwash and toothpaste for dry mouth!  Parkhurst hats and toques (from the Bay or MEC) that are extremely soft fleece and wool combo that didn’t irritate my sensitive bald head.  I agree with the Glaxol base lotion for radiation burns and after-care.

Christine says:

Glaxol base lotion for radiation and natural baby wash for during chemo. I used it as soap and makeup remover and to help clean sore crusty eyes.

Heidi says:

Coconut oil for EVERYTHING! and a cream conditioning shampoo such as Renpure for conditioning bare scalp instead of drying shampoo.

Emma says:

Lint brush was my everything when my hair was falling out!

Sarah says:

Heating pad for bone pain during chemo was a life saver.

Melanie says:

Green beaver toothpaste in apple or orange. It was the only thing that didn’t irritate my mouth sores.

Emily says:

Pur mints for chemo and Herceptin infusions – they tasted awful!

Erica says:

Thermometer. During my chemo there were many nights when I got the chills and my temperature went up. I kept my thermometer (the one you put in your ear) right beside my pillow. It came in always super handy.

Kelly says:

True and Co. makes a super soft front clasp bra that was a life saver for surgery and radiation. Also, the high fashion radiation gowns by ‘radiant wraps’ were cozier than the nasty hospital gowns

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.